Blog 63 Tuesday 29th November 2011

Last night 6pm, I had my appointment with Dr Macmillan in Northampton. As normal I was asked about the chemo drug side effect symptoms and severity. I explained one new symptom that had materialised and in fact I should have mentioned it on my last meeting at Halloween but neglected to do so..... Yes probably memory again............... Tinitus......... ( loud ringing in the ears)  it has affected me badly, but I did not consider it a side effect of the Chemotherapy drugs.  I had not been told it a possibility, or read it anywhere..

Dr Macmillan informed me that it was a very unusual and rare side effect, he appeared quite concerned. I was taken off Oxiliplatin drug immediately explaining that it was this drug that was the possible cause and it could lead to total loss of hearing if left. Today I went through all the other drugs and was hooked up to my 48hr IV infusion. So far I feel much better than usual at this stage..........................

I have since found that Ototoxicity is a condition of the ear that can be caused by platinum based drugs (Oxiliplatin falls into this category) I have a further appointment with Dr Macmillan in two weeks time to assess the condition after coming off the drug. I now believe I have suffered every single rare side effect as well as the "normal" side effects............................... a medical conundrum
 co·nun·drum/kəˈnəndrəm/

Noun:

A confusing and difficult problem or question. A question asked for amusement, typically one with a pun in its answer; a riddle.

 Guinea Pig comes to mind.....

Wendy's Blog

I always new he was special and that is why I love him so.....however I have suggested that as he is such a conundrum, maybe he should be donated to science one day?

Blog 62 Friday 25th November 2011

Where has 2011 gone ! Its flown past probably because it's been a very busy year. Monday 28th November I'm seeing my Oncologist Mr McMillan again. It's good being able to speak openly and get answers or possible reasons for things that happen as a consequence of the Chemotherapy.

The cold weather is playing havoc with my face and hands. The cold wind on my face, even during the "OFF" week of chemo still attacks the muscles in my face and I look like one of those size one dogs with a size ten skin ......Shar Pei  I believe. Snow forecast today for Scotland, I certainly will not be playing snow balls this year. Sixth chemo session next week six more to go !! I can't wait to get over this sicky headachy lethargic feeling.

I've started  putting together a business plan and web site for a small business venture, for when this is all over.  It's all come together quite nicely and taken my mind off things, it's also stopped me disturbing Wendy when she works from home.  So much for early retirement.!!     

Blog 61 Tuesday 22nd November 2011

Last Saturday I placed a link on the blog to "Seven Seas Immune Defence Health Oils" I have found them good at increasing my blood count so Chemotherapy can go ahead as planned. If the blood count is low the chemo would be put off for another  week.. Seven Seas is a supplement for  Immune defence, the ingredients pretty standard for this type of product. I found it worked for me and I'm sure anyone fighting with cancer would agree, Its a case of grab hold of anything that gives results or hope............................... I have been contacted by a representative of the Seven Seas product company with a very nice email..........

Quote
"Sadly the Medicines Laws in the UK make it illegal for any supplement company to endorse or mention a product linked to serious conditions like cancer.

Most doctors and cancer specialists tend to give very specific guidance on the use of food supplements, especially during treatments like chemotherapy, so we would strongly suggest that you make your doctor aware of anything you are taking other than medications.

We are very pleased to hear you are finding our product helpful, but must make it clear, we do not endorse the use of any of our supplements during cancer treatments and we cannot be seen to promote our products for this purpose".................................unquote

I can understand the above comments as I'm sure that some unscrupulous companies would make some outrageous claims about their products, which could obviously give false hope. All I'm saying is it works for me !!!!  Hhmmmm I wonder if they have anything for..............................  

Blog 60 Saturday 19th November 2011

6am and wide awake then straight into the regime of taking the tablets. Previously I never thought that I would ever be so reliant on drugs. I hated taking tablets and only just managed the odd aspirin here and there. Today and for the rest of next week, I am off the steroids and anti sickness drugs, however I am still taking Lansoprazole which were given to me after my exit from A&E. These tablets are brilliant, the chemo was giving such severe symptoms of heartburn I thought I was having a mild heart attack. A course of these have sorted it.

I have also found that "Seven Seas" Health Oils Immune Defence tablets have regenerated my white platelets and allowed the Chemotherapy to carry on as normal.  I am also eating loads of oranges etc.

Before taking the Seven Seas Immune defence my bi-weekly blood tests were showing that the white platelets were being destroyed by the chemo at such a rate that every three sessions would have to be postponed. Thanks to the above bolstering my immune system, I believe I will carry on and finish my chemo in March 2012 as planned!!! You can get these at most supermarkets. The results are showing in my blood tests these have also got to be good for you sane people as well!!!! Thanks for reading my blog, double click on the cluster map below to see which countries and city's my ramblings have reached.

  

Blog 59 Thursday 17th November 2011

Just waiting for the nurse to turn up between 3pm and 3.30pm it's 3pm and I'm glad the 5th chemo session is nearly over. Same old same, cant sleep, nausea's etc etc equipment is soon to be detached by the nurse, so at least I will be properly mobile again. Not having to worry about an attached pink bottle on a slightly too short tube, which just so happens to be intravenously injecting 2.5 mls of toxic poison into my body every hour for 48 hours. MMMmmmmmmmmmm. I have gone completely off alcohol, my taste for hot hot curry has diminished, as in I can't take the chili heat any longer, and coffee makes me feel bloated  maybe I'm mistaking old age for chemo side effects!!!!

Blog 58 Monday 14th November 2011

Not sure where the weekend 12th & 13th went, time just flew. Had blood tests this morning and eagerly await the results. If the white platelets are low, as I suspect they will be. I may have to have a blood transfusion, according to the nurse. I think it will just mean that the chemo is deferred a further week. I am sure that blood transfusions are kept, just in case of low blood count and infection. The Lansoprazole as previously mentioned was fantastic immediately got rid of the severe heartburn I was experiencing and to date it hasn't come back.  Do not defer  my chemo I want to finish in March 2012!! Good result for Wendy her colonoscopy came back clear, as I recently reported bowel cancer has effected her family in the past so a great result. 

Later ......................... Yey!! bloods have come back OK so 5th chemo session here we come I really shouldn't be so pessimistic I've been popping some Immune deficiency natural tablets and loads of Vitamin C must have done the job brilliant !!!!!

Blog 57 Wednesday 9th November 2011

Miserable wet and cold days in England now, clocks have gone back to daylight saving, but still dark evenings and mornings. Makes me wonder why we ever moaned at the heat of the southern hemisphere. I had an appointment yesterday with Mr Waller (thoracic surgeon) he has ordered another CT scan towards the end of the chemo. It seems ages away but I'm sure the time will fly. Mr Waller came up with his thoughts of why I had chest pains that saw me at A&E and being admitted to Kettering hospital  Cardio-oesophageal reflex or Acalasia this can cause severe pain in the sternum not unlike a heart attack. A recent blog stated that Gaviscon was my friend, with the prescription that I have been given; Lansoprozole 30mg  hopefully, I will not need the Gaviscon. The above is just another severe side effect of the chemo drug Oxaliplatin and not very pleasant. Only 8 more sessions to go !!!!! Yay. Fingers crossed for next monday when my blood cells are counted to see if my next session will continue. 
 

Blog 56 Friday 4th November 2011

This week has been a sad time for all of us but especially my wife Wendy, as during the week she lost a very dear "Uncle John" suddenly in Bloemfontein South Africa, today is his funeral. Wendy's folks travelled yesterday from Durban, Amanzimtoti to Blom and will read wendy's reminisce out at the funeral. Unfortunately Uncle John never got to meet our daughter Hope.........and we never got to say goodbye..................

End of the fourth chemo session, I've  been sleeping all day, but have managed to get out and take our  dog "Jack" for a walk in the woods. We got our labrador retriever "Jack" last year on Halloween night (Jack O Lantern) so he has been with us exactly a year. Jack seems to know something is wrong and would sit or lay by my side all the time if I let him. Jack still trys to get onto my lap as if he was still a pup (he is now 35kg's)

Warm bright sunshine but menacing black clouds all around. I'm feeling extremely lethargic probably due to the fact that my blood is being destroyed by the Oxaliplatin chemo drug. My white platelets have been reduced from a count of over 200 to less than 88 in 3 sessions, if this continues my next session will be deferred as the platelets will be less than 60 and no match for any infection that waits to invade. I have March 2012 in my mind as the end of the Chemo but if every three or four sessions get deferred I am looking at April or even May. Just got to remember the good that it's doing.

Blog 55 Wednesday 2nd November 2011

Haven't slept at all last night. My connected Folfuser IV fell on the floor twice which pulled on the Porta Cath, I also have quite severe indigestion and heartburn which is a reported side effect ("Gaviscon" is my friend). I am quite nausea's this morning but have yet to take the tablets. I could go on, but I don't want to bore you with the ailments or side effects, especially as certain friends seem to think I have an annul fixation. All I said was get yourself checked for bowel cancer if your over 45 cause thats when it started with me. I don't call that a fixation, get a colonoscopy!!! Guy's get yer undercarraige checked, Prostate cancer kills a man every hour in the UK !!!! Testicular cancer primarily affects younger men and is the most common form of cancer in men aged between 15 and 44.

 Ladies in a previous blog I mentioned that my first wife is being seriously effected by cancer of the ovaries and bowel this all started in her early fifties this has also devastated my three sons and family. Early diagnosis is vital to effective treatment. Please check out the Cancer research UK website for signs and symptoms for early diagnosis.

Wendy's Blog

Got home today to find that the postman had dropped off a lovely padded envelope for me. Excited  until I opened it and found "Kleenprep". Here I thought I had up to 2 months before my colonoscopy and it is Saturday week....... John's turn to laugh at me!!!! The reason why I am going for a colonoscopy is because bowel cancer runs in my family. My mom had 13cm removed from her colon, thankfully she has been clear for 11 years. My Gran also had it as well as a few other family members.
Good thing I can work from home so I know where I will be on the Friday!
Iain looks as if I am going to have an annul fixation for the next couple of weeks!!!

Blog 54 Monday 31st October 2011

Happy Halloween !!

I've had my blood tests this morning in readiness for the chemo starting again tomorrow, this will be the fourth of twelve sessions. Hope is still on half term holiday(incept day) so was very interested when the nurse connected to the Porta Cath, but ran away quickly when the blood was drawn into the phials. My car tax has expired, which normally results in a long wait at the Post Office, luckily this can now be done on-line, I also have an appointment with my Oncologist Dr Macmillan in Northampton, a pumpkin to carve and trick or treating, not to mention Hope's swimming club training tonight. Phew!! lucky I'm semi retired.  The nurse that came to administer the blood tests today was the same nurse that answered my call to the health care at home service 24hr help desk last week ,when I had the chest pains. I cannot speak highly enough of this service and would recommend it to anyone going through Chemo or in fact anything that can be treated at home. We are fortunate enough to have a health care scheme from Wendy's employers that pays for this service. It takes out all the stress of travelling to and from hospital and the waiting that is inevitable involved.  Not looking forward to this weeks nausea and tiredness that is also inevitable.  Tomorrow I will be out of commission all day wired to the iv drips for a total of 56 hours YuuuckK !!

Glad to see the daily visitors on the cluster map from around the world, makes me feel that I'm not actually rambling along talking to myself!!

Blog 53 Friday 28th October 2011

Wow.......... not sure what I've just been through but it was not pleasant. I have been discharged from Hospital following a worrying 22 hours.We are still none the wiser. After the anti coagulant injections in my stomach, ECG, CT Scan, numerous blood tests and blood culture tests, no apparent reason was found for my chest pains. I arrived at A&E at 10pm I have never heard of "barrier nursing," but A&E  knew immediately that I was on Chemotherapy and I was treated like I had Leprosy, but treated in a good way.  I was isolated, but nurses with colds, for instance, were not allowed to nurse me and I was kept away from the general areas of A&E being kept in a side ward. Following initial tests, I was eventually taken to the main ward at 3am, again a private room and again with "Immuno compromised patient" labels on the doors which depicted a big "Stop" hand. I slept until 7.30 breakfast. The following 14 hours were intermittently interrupted by sleeping, eating and injections etc Unfortunately the hospital were not equipped to use the special equipment and needles the inserted Porta Cath needs, so back to, "Just a small scratch" scenario "don't say that, it actually hurts like hell" ! I had been looking forward to see Hope swim in her trials, for Corby swimming club,this had been arranged for last night at 7pm. I never did get to see her swim as I didn't get discharged until after 8pm but she passed with flying colours. Wendy has had to put her life on hold over the last couple of days with cancelled business appointments and juggling with work and Hope.  In a previous recent blog I said I didn't know what would happen if I had a few bad days whilst Hope was on half term holiday, Silly saying that really, as your loved ones always take over. Thanks Wends......................x

Blog 52 Thursday 27 October 2011

Wendy's Blog

Just got back from the hospital and thank goodness managed to see the Consultant. The prognosis does not lend it self to a heart problem as the pain lasted too long. However it is likely that he has a blood clot. Since they gave him blood thinning injections the pain has gone, the grey colour and clamminess has gone. He is still in hospital awaiting another CT scan.

If it can't be done today they will provide him with medicine and send him home, he will then go tomorrow for the CT scan.

His treatment has been brilliant, they introduced "Barrier Nursing" from the moment he arrived in the A&E department last night.  Dr McMillan phoned ahead, when John gave his name to the reception, he was immediately whisked to a private room where a nurse put "isolation stickers" to the doors. He has been kept in isolation ever since. This is too protect him from bugs and infections. Nice one!

We have just taken him a couple of newspapers, orange juice and some fruit, as much to Hope's horror there is no TV in the room.

We will go back at 3.00 and check up on him again and hopefully he will be able to come home with us. He does not want to miss Hope's swimming trials tonight.

Blog 51 Wednesday 26 October 2011

Wendy's Blog

Midnight and sitting here worrying. John has not been well all day, breathless and clammy to the touch. This evening he was complaining about chest pains. Eventually after more nagging (why don't men listen the first time), he phoned the nurse at home 24 hour help line. He explained his symptoms to the nurse and then we had to wait for another nurse to phone back.... a more senior nurse. This then led to  a further phone call from Dr  MacMillan (Oncologist). Dr MacMillan's advice was to present John to Kettering A&E and John then left for the Hospital.

I can't go, Hope is fast asleep and we don't want to traumatise the poor child, she is going through enough. So here I am feeling tearful and alone. I have since spoken to him a few times and....

He was taken in pretty quickly and prepped for an ECG, this showed up a problem so he is being  admitted for further tests and scans. The one possibility is a blood clot! He sounds scared but I know that he is in the best place, I just wish that I could be there to hold my best friends hand, my husbands hand!

You know what the other frustrating thing is, he is more worried about  his car sitting in the car park at the hospital, than himself....again one word....MEN!!!!!!

Blog 50 Saturday 22nd October 2011

Beautiful blue sky and sunny days in England during October, it looks like summer but the winds are now cold. Wendy's mum has now left us, returning for the warmer temperatures of South Africa and I must thank her for all the work she has done especially with Hope. Hope is now on school break for a week. Just finished my 3rd session of chemo which has been much better this time, the side effects have been less challenging due to the longer IV infusion. I have still found it impossible to sleep even with Tamazipam sleeping tablets, and have experienced the severe pins and needles sensation in the hands but all in all much better this time round. I'm having my next CT scan on Thursday 27th October for my thorax, abdomen and pelvis. The last time I had a CT was on my birthday 13th May when they found that certain "deposits" on my lungs had grown from 5mm to 11mm in the left upper lobe and Right lower lobe from 5mm to 8mm in just 3 months. This then led to my recent hurried operation. I have been given a CD of my entire CT scan and can easily pick out the offending "deposits"as they have been highlighted by a contrast agent that was injected prior to the scan. Next Thursday scan will hopefully give good news....................Glenfiddich tonight I think.

   

Blog 49 Wednesday 19th October 2011 Chemo session 3 Day One & Two

Yesterday's Chemo session was a long day, total of 8 hours infusion. Finished at 6pm I felt extremely tired but was unable to sleep last night, especially as I was secured to the Folfuser IV. The IV (Yes Hope) resembles a baby bottle with a Pink lid. It fell on the floor, pulling on the Porta Cath. Got wrapped around my neck, pulled by Wendy turning over, and generally caused a nuisance. I eventually slept at 4am this morning, Wendy was out of the house by  6am, going to a 2 day convention in Daventry (that's what she calls it anyway). I was woken by the garbage and re-cycle truck at 8am. Luckily Sue (Wendy's mum) is still with us, so she took Hope to school. Half Term next week, Sue is back in South Africa, I'm not sure what I will be able to do with Hope, if I have a few bad days after half term. At the moment it's one day at a time. My blood results came back OK, but the white and red cells count have "Dipped" again which is expected, but analyzing and projecting the loss of these vital elements over the next 6 months, my Chemo will be suspended around January if the loss of the elements happens at the same speed.  Tonight, it's parents evening at the school, with Wendy away, I will go. I'm sure the conversation will be on, how Hope is coping at school and with my situation. I am hoping she has opened up to the teachers on how she is feeling. I had an interesting conversation with my oncology nurse yesterday, she was discussing how my bowel cancer ended up in my lungs but also how the disease, when being attacked by the Chemo drugs,  actually migrate to get away from the drugs and try to find a new home in other parts of the body (clever little bugger's ain't they) fortunately the cancer cells use the blood stream to migrate, hopefully then, the cancer cells will be stopped in their tracks there and then by the Chemo Police and zapppedddd . But you can never find a copper when you need one can you !!!!!!

Blog 48 Monday 17th October2011

Start of my third Chemo session this week. Today I have had the bloods taken by the visiting nurse, who also asks loads of questions of the various intensity of the symptoms experienced on last session. I have had a week off from the Chemo which has gone very quickly, and am not looking forward to this week. As previously stated the symptoms were far worst the last time and the Doctor with a big smile on his face said "Yes, the side effects were bad but they will get Worst"..... eh..... don't you mean they will get better doctor?.......... "No (smiling) they will get worst" !........ I suspected that.. I have also had the results of the ultrasound scan last week on my hand and the one vein is completely blocked by a blood clot from the use of cannula's but at least the swelling is going down. Tomorrow the nurse is with me from 9am to 5pm as the entire Oxaliplatin regime is now being infused over an 8 hour period, then the 5FU Fluorouracil is given over a 48 hour period. The 8 hour infusion is because the Oxiliplatin effected me so badly the last time and just means that the Folinic Acid (Leucovorin) and Oxiliplatin will be set to drip through the IV at the same pace as each other but over a much longer period. (Day time TV here I come)


Hope's Blog Tuesday 18th October



Today my daddy had the folfusor well we call it a babys bottle ha,ha.Today the lid is pink last time it was reddish brown and the first time it was pink.Before I knew what colour it was going to be I guessed green and the last time he had it I guessed black.

Blog 47 Thursday 13th October 2011

Today I have an appointment at Kettering X-Ray department for an ultrasound scan on my hand. With the constant use of cannula's for IV's you may remember in a previous days blog I reported that I believed I may have had something left behind in my vein. The doctor and surgeon said it was a blood clot, which I probably accept now as after the last 2 months waiting for the scan appointment the vein has returned to normal. Tomorrow the nurse will be here to give an IV of saline to clear out the Porta Cath ready for next weeks session. With the onset of colder days and people sneezing all around me, I am becoming more concerned at getting colds and flu etc I don't often suffer, but when I do get a cold or flu it always ends up as a chest infection. One of the side effects of Chemotherapy is {Neutropenia} a lowered resistance to infection, as the chemo drugs destroy the white blood cells that fight infections. On my week off from the drugs I have researched, what diet may assist in order to bring up the blood count but found that it is quite controversial "The Oncologist" magazine has recently said it is not scientifically proven that a diet will assist 
Guidelines given to neutropenic patients regarding diet are currently being studied. As of 2011, the Neutropenic Diet Guideline includes the following recommendations

• Avoid raw vegetables and fruit.
• Avoid take-out foods and fast foods and fountain drinks.
• Avoid aged cheese.
• Cook all produce to well done. Eggs must be hard-boiled.
• Avoid deli meats.
• No raw nuts, nuts roasted in shell, or freshly ground nutbutters from a healthfood store.
• No yogurt

I thought the Atkins diet was bad !!!!!!

Hope Naisbit's blog (Johns daughter)

Avoid cold stuff
And thats about it
Now be a good boy daddy we don't want anything happening to you do we.lol ha ha.

Blog 46 Tuesday 11th October 2011

I have slept most of the weekend, all day and night. I have no energy and feeling very lethargic. I have tried not to sleep during the day; on instruction from the nurse, but my available energy versus's available gravity puts me on the back foot all the time. Weird though, that I am able to sleep well at night. I put the daytime sleeping down to a chemical sleep, all the chemo drugs still racing around perhaps. I have noticed that the last session side effects have lasted a lot longer i.e tiredness and headaches are still with me and I am getting blood staining from my nose. My next appointment with the Oncologist Mr Macmillan to discuss the lingering side effects is 6pm on Halloween !!! that's also weird, trick or treat I wonder..........

Blog 45 Thursday 6th October 2011 Chemotherapy Day 3 Session 2

Side Effects
This session has been awful I have reported to the nurse of the side effects that have occurred over the last two days but especially today. When eating even the smallest morsel, my jaw has locked, this has occurred on several occasions. I also had muscle spasm's in my hands, causing them to close tightly for short periods of time but quite frightening.  I also have muscle spasm's in my face which caused my eyelids to close involuntarily (nothing to do with the tiredness, I was walking hope from school) I became very sleepy and slept most of the day yesterday and all afternoon today.Having reported this, my nurse telephoned Dr McMillan (Oncologist) who immediately asked that future Chemotherapy sessions are extended to Eight Hours IV Infusion. This is where I get the :-

Treatment
Ondansetron a powerful anti sickness drug via IV drip,
Dexamethasone is a potent synthetic steroid drug. It acts as an anti-inflammatory and immunosuppressant. It is 20 to 30 times more potent than the naturally occurring hormone cortisol .
I then have Magnesium Sulphate and Calcium Gluconate in IV this is taken just before and just after  Oxaliplatin two hour session of the main Chemotherapy Drug
IV of Folinic Acid Folinic Acid assists the Oxaliplatin but please click on the links for the full explanation.

This was previously taking approximately 6 hours which will now be extended to 8 hours

5FU Flourouracil   I then have this as a  48 hour IV which sits on my belt and is administered at 5.07 mls an hour

Blood Tests
I have started plotting my blood results as I noticed a few of the categories have "Dipped" I have put them onto an Excel Graph and downloaded the Translation and "Normal Ranges" Hopefully the translation and normal ranges may be helpful to others reading the blog and will endeavour to publish them. I've got time on my hands so I can do this sort of thing!!! I also have cancer markers within my blood tests and found it quite interesting whilst reading up on this that Cancer Markers can be requested along with a blood test that any Doctor can request.

Cancer Markers Blood Tests
Examples of markers your doctor may test for include:

• CA 15.3: used to find breast and ovarian cancers
• TRU-QUANT and CA 27.29: may mean that breast cancer is present
• CA125: may signal ovarian cancer, ovarian cancer recurrence, and breast cancer recurrence
• CEA (carcinoembryonic antigen): a marker for the presence of colon, lung, and liver cancers. This marker may be used to determine if cancer has traveled to other areas of the body.
• Circulating tumor cells: cells that break off from the cancer and move into the blood stream. High circulating tumor cell counts may indicate that the cancer is growing. The CellSearch test has been approved by the U.S. Food and Drug Administration to monitor circulating tumor cells in women diagnosed with metastatic breast cancer.
• (EGFR)epidermal growth factor receptor Giorgio V. Scagliotti, MD, PhD, head of the Thoracic Oncology Unit, Department of Clinical and Biological Sciences, University of Turin, San Luigi Hospital, Orbassano, Italy, stresses the importance of testing and treating non-small cell lung cancer (NSCLC) patients based on the mutation.

The markers that are checked in my Blood tests are CEA & EGFR

Wendy's Blog

Looking in on what John is going through is awful, as a Mother and Wife your instinct is to want to take the pain and worry away from those that you love, but you know that you can't. At the moment I have an extra pair of hands in the house with my Mum here but that is for only two more weeks so I am know looking at what to do when she goes. I was looking at chest freezers today so that on weekends I can cook for the week ahead as John is really struggling with the pins and needles in his fingers and hands. Cold effects them really badly. When I get home from work it would be easier if the food was pretty much done.

When John is asleep I keep checking on him and check to see if his chest is moving as he is in such a deep sleep (which is so unusual). I am also worried that he will get an infection that when I pass him I put my hand on his forehead to check temperature and if he feels clammy the thermometer goes in to his mouth.

I am constantly walking around with a sick feeling which is caused by worry, worried for John, worried for Hope and worried for the boys.

Hope's Blog

I'm really worrying about daddy he doesn't have his chemo on today but he still has the cold affect.I'm in year five and all the teachers are worrying about me even my year four teacher is, at least I have teachers and my friends to talk to.Sometimes when my mummy isn't home I have to help daddy get some stuff out the fridge and freezer cold!

When my dad read the blog that I wrote he nearly cried.My mum then said have you read mine obviously NOT!!!Because hers is in black and mines pretty like I am.B)

Blog 44 Wednesday 5th October 2011 Chemotherapy Day Two session 2

Throat and mouth very bad today and Jaw keeps locking when I eat. Also getting the pins and needles sensation inside mouth. Haven't felt sick today but drinking lots of tepid water. Completely missed my steroid tablet today which was foolish took the anti sickness but forgot that one. Glad to see the cluster map is filling up and the followers from all around the world, it makes me feel better for sharing my thoughts and even better when someone actually reads it! and if at all possible bring further attention to Bowel Cancer and the absolute urgency of catching it in the early stages. 45 and over?? get a colonoscopy every couple of years.  

Blog 43 Tuesday 4th October 2011 Chemotherapy Day One Session 2

Hopefully, I can show the paraphernalia that goes with a Chemo session. The boxes on the table are full when they arrive, of  various IV's  Drugs and Folfuser. IV's and drugs for today and Folfuser for next 48 Hours. IV's and drugs today only took 4 hours to administer and fit the Folfuser.

I have started feeling far worse symptoms today, after the session than I did the first time. My appointment with Dr McMillan yesterday, confirmed that this may be the case going forward to the next 10 sessions. Headache has returned, discomfort in the mouth and throat,  especially when eating. Can't eat or touch anything mildly cold as severe pins and needles takes over with a burning sensation

The drugs and IV are all explained in my previous blog 36 and all carry side effects. One bit of good news my blood tests came back OK. I have been reading on Twitter that your Chemo session is suspended for two weeks if your white cells come back low or in some cases zero! Again I count myself lucky and wish those in that situation well and get those bloods back a.s.a.p.

Blog 42 Monday 3rd October 2011

My memory is shot and I'm not talking laptop! How could I forget to use the EMLA anaesthetic cream prior to the nurse visit today, especially as I mentioned this in my last blog. This morning is blood tests prior to second session of Chemo. The needle used to access the Porta Cath is very small and has a slight bend but needs a fair amount of pressure to insert it, firstly to enter the skin and secondly to break through the membrane of the Porta Cath Again Ouchhh but this time it's my fault.




This is a wonderful device and certainly gives the veins in your arms a rest. The device is flushed with saline and then when bloods are taken or drugs by IV the Porta Cath has Heparin Sodium Flush injected this is an anti coagulant for the IV line. Last week I reported that the nurse could not draw blood via the Porta Cath which at the time was not a problem today was the same, so I was asked to rotate my shoulders and lift my arm up and down. Suddenly the phials started filling up, suddenly I saw myself performing this ridiculous ritual on "Worlds Funniest Videos" on the tv. Not ! no not even UTube!!

Later today, I have an appointment with Mr El-Rabaa my bowel cancer surgeon in Kettering for a follow up and later this afternoon an appointment with Dr McMillan my Oncologist in Northampton to see how the Chemo is going. Busy Busy Busy tomorrow Chemo starts again...................................round 2 .........ding!


Hope Naisbit : I'm not so sure about that white picture it looks quite yuk especially whats inside of you it gives me the shudders uhhh

Blog 41 Wednesday 28th September 2011

Nurse at Home service today to flush the Porta Cath through this is to be done every week for the first four weeks prior to chemo as the device is newly fitted. I have been given some Anesthetics cream (EMLA) for use one hour prior to any use of the Porta Cath.  EMLA (an abbreviation for Eutectic Mixture of Local Anesthetics).and contains ^[1]Lidocaine/prilocaine is a mixture of equal quantities (by weight) of lidocaine and prilocaine. It didn't seem to work as I could still feel the needle go through. The Porta Cath was flushed with saline and the nurse tried to draw blood. It also didn't work but she said it was fine as the device had taken the saline ok. I hope I don't get a problem when they come to take the blood tests next week. Busy week next week appointments with Dr Macmillan (Oncologist) in Northampton, Mr El-Rabaa colorectal surgeon in Kettering.  Blood Monday and Chemo Tuesday Wednesday and Thursday...............bring it on....................

Blog 40 Tuesday 27th September 2011

If Wendy can do it anyone can!!!!!!

Wendy has sent off for a pack to run a Half Kilomathon being organised by Bowel Cancer UK. The Kilomathon is being held in March 2012. You can either run the Kilomathon (26.2K) or Half Kilomathon (13.1K) This takes place in Derby in March 2012 and Edinburgh in April 2012.

A few years ago Wendy ran in the “Race for life” for breast cancer in memory of her very close school friend Caroline from South Africa.  


In return for a charity place Bowel Cancer UK asks you to try and raise:

Kilomathon: minimum sponsorship £300 (registration fee £25)
Half Kilomathon: minimum sponsorship £200 (registration fee £25)

You get a fundraising pack and running vest to get you started!!!!

Tel: 020 7386 4006
Website: www.bowelcanceruk.org.uk
Bowel Cancer Advisory Service: freephone 0800 8 40 35 40

Come on guys get your trainers on !!

Blog 39 Saturday 24th September 2011

I have been feeling extremely unwell over the last two days. lack of sleep during the Chemo session became a big problem and hit me on Thursday and Friday. I had to ask for something and the doctor gave me some Temazepam  It sure knocked me out, and allowed for a complete nights sleep. My nurse has told me to avoid sleeping tablets if possible. I will probably use the Temazepam during the chemo sessions if needed, it may make the daytime more bearable. Obviously the steroids prescribed to give me energy are doing just that but at the wrong times. Today we went to Rockingham Castle local country fayre and felt I had to sit down through breathlessness whilst simply walking. Luckily Hope was making a corn dolly at one of the craft stalls, it was great to watch her do this craft.   I couldn't even bring myself to have a pint of the real ale on offer !! in the beer tent.   This first session has really knocked me for six. Next week, I have a break from the chemo but will still be getting a visit from the nurse on Thursday to flush the Porta Cath through, ready for the next session...... One down ........Eleven to go..............  

Blog 38 Thursday 22nd September 2011 - Chemotherapy Day Three - Session 1

Now it hits! Feeling nauseaus inspite of anti sickness drugs. Couldnt sleep, the IV was getting wrapped around my neck at one stage. Just generally larthargic and feeling like C**P ! The IV is to be removed today by the 'nurse at home service' but not until tonight at about  5pm. I have noticed that the surgery for the Porta Cath fitted into my chest to take the chemo drugs has started to become inflamed. If this gets to a stage of being infected, I must go back to Hospital for strong anti-biotics. I am feeling tired during the day but must not sleep. Take the dog out.......... Go to Morrisons food shopping, and I have an annual eye out patient appointment at Kettering Hospital. All the above finished, Its still only 2.30pm and I cant wait until 5.30pm.

This is only the first of 12 Chemo sessions, every two weeks until next March !!!! Mentally I'm sure this is going to test me and family but staying positive of how the drugs are killing the Cancer will overcome any anxiety I may get.

The Porta Cath must be purged every week for the first four weeks and his is destined for next week Wednesday then Bloods the following Monday and it all starts again. The nurse has turned up on time and very quickly removes the IV and checks the Ports Cath, thankfully its not infected, just a small trauma from the drugs on new scars.         

Blog 37 Wednesday 21st September 2011 - Chemotherapy Day Two

I did not sleep well at all last night. The tube for the Flourouracil Folfuser is not really long enough, so it ended up under my pillow This picture is showing the Folfusor in place for 48 hours

Folfusor 4800mg in 110ml Sodium Chloride

48hr infuse 2.5ml /hour

This morning I have taken anti sickness Ondansetron and Dexamethasone Steriods (previously explained) still with the niggling headache. I was originally told that I would get pins & needles sensations in hand and feet................ Wow !!! and how; when I touch anything cold. Washing hands in cold water is a big problem and simply picking up a bottle of milk........ Hands suddenly turn freezing and Pins and Needles immediately. Hope has left messages on the basins and fridge "Hot Water Only Daddy" as I have forgotton a few times.

True daddy very true. I even used my letter magnets on the fridge to say hot only daddy! 

Blog 36 Tuesday 20th September 2011 - Chemotherapy Day One

I am very grateful to have my treatment at home by the nurses of Healthcare at Home Ltd or otherwise known as nurse at home.

Yesterday, I had to have my blood taken for a full blood count prior to Chemo. This will have to be taken every two weeks prior to my Chemotherapy. The nurse, Vanessa, could not use the Porta Cath as it had not been purged with saline solution since its insertion last week, so back to the good old needle "Just a small scratch"   even Vanessa said "its nothing like a small scratch is it"? No! its not.

Chemotherapy started today.   The first stage started at 11am, in my lounge by Janice of the Nurse at Home Service. The Porta Cath was purged and drip set up. Please click on the links for full explanations.

 I start with Ondansetron a powerful anti sickness drug via IV drip, the list then reads like a pharmacist order list Dexamethasone  is a potent synthetic steroid drug. It acts as an anti-inflammatory and immunosuppressant. It is 20 to 30 times more potent than the naturally occurring hormone cortisol . When all that disappears from the IV, I then have Magnesium Sulphate and Calcium Gluconate in IV this is taken just before and just after a two hour session of the main Chemotherapy Drug Oxaliplatin

I was able to move around with the tripod and drips, which was lucky, as all the above came in 100mls or 250mls which meant that I had to keep running to the loo (it was like carrying a large hat stand with tubes) I then had an IV of Folinic Acid Folinic Acid assists the Oxaliplatin but please click on the links for the full explanation.

As this was finishing, Hope my daughter came home from school and bravely checked out the dining room, with all the nurses equipment adorning the floor and table. She also was able to see the recent addition of the Porta Cath and how it will now be used. My thoughts go out to all the children and young people around the world that have been diagnosed with cancer .... incredibly brave comes to mind.

I am then married up to my 48 hour IV which sits on my belt and is administered over the next 48 hours at 2.5 mls an hour 5FU Flourouracil    The IV bottle resembles a baby feeding bottle and has a 'bubble' within that is under pressure the bottle contains a drip that will only allow 2.5 mls through an hour. I say married to me as this is continuing every two weeks for six months. I know my newly acquired "marriage" will get under my skin several times over the next 6 months!! I will be sleeping with, eating with, cuddling with, walking with and the bottle top is Pink !! Hope said I should ask for a Blue one. 

It is now 9pm and 10 hours since the IV's started I am tired, my legs and arms feel heavy and I have had what feels like the start of a headache for about 4 hours. Honestly just feels like the after effects of a cheap bottle of Cabernet Sauvingnon! I'm sure there is worst to come. !!!

Blog 35 Thursday 15th September 2011

Unfortunately I was kept in hospital last night, unfortunately for Wendy as she had to leave the hospital at 10pm and return again this morning to pick me up in the Northampton rush hour. This also meant that she had to cancel a work appointment.

I came out of surgery at 8.30pm !! and was kept in the recovery for another half hour as my blood pressure was unusually high. During the procedure the anaesthetist kept me just under sedation, so when the surgeon spoke to me, I was able to garble a reply. With the sedation and the local anaesthetic all I felt during the procedure was a bit of pushing and pulling on the Porta Cath to get it into position. I was in surgery for fifty minutes but due to the lateness of the hour I was not discharged. I saw Mr Ratliff this morning and he said that during the surgery and sedation, I had apparently asked for "Another Gin & Tonic" I never drink Gin & Tonic!!

I   have also been contacted today by the 'Nurse at Home' service. I am having the Chemotherapy administered at home by local nurses which will be much better for all.  I am starting on the 19th September but firstly have to get blood tests

My new Porta Cath shows as a lump on the right side, where the previous illustration on the blog shows. It actually feels like a brand new pair of shoes, far too tight, needs wearing in, and sore as hell when you move.......  The good thing is the Porta Cath can take up to 1,000 needles before it needs replacing (no not all at the same time!!!!!) I am presently very relaxed about the whole thing, but also worried about the unknown.

Hope's blog

Daddy keeps showing me the thing that happend to him and it looks horrid and I don't want to see it again. Anyway hello everyone. I just wanted to say a quick I am so sad because I am goodbye.

Blog 34 Wednesday 14th September 2011

Off to The Three Shires hospital in Northampton for my appointment with my surgeon; Mr Ratliff, to have the Porta Cath fitted, my buddy for the next six months. Nil by mouth since 11am this morning,......Mmmmmm............. back by 10 pm tonight.

Blog 33 Tuesday 13th September 2011

It has been two years, almost to the day, that a colonoscopy revealed my colon cancer in advanced stages. It has been four months to the day that a CT scan revealed polyp's on my lungs had changed in size and increased in number.

Since then Ive been pushed, prodded, injected, anethetised, sedated, incised, clamped, stapled stitched and sewn. I have eleven incision scars across my torso, soon to be twelve.  Ive attended Nine different medical establishments on two different continents for various procedures. I have seen more of my internal organs via video, photos and on surgeons vdu monitors than I have ever seen of my back, (for instance)  ................but in all this time I have never felt ill.............. never felt as if I'm sick .........never felt unwell with the cancer, probably because I was lucky and caught it in time................................

Yesterday, I met Mr Ratliff, the surgeon  who will be inserting the Porta Cath. He was very reasurring and confirmed the procedure for tomorrow at the Three Shires Hospital in Northampton. I will be going in at 3.30pm and have been offered overnight stay, but will probably be discharged at about 10.30pm that night if I have the option.

With the usual consent forms completed, and authorisation numbers exchanged, as of tomorrow, I will be wearing this Porta Cath device in my chest for six months to receive the Chemo drugs.

A few weeks ago I mentioned that my previous wife; Janice, was also going through a difficult time with cancer and the devastation that this had caused  my sons. Janice has been readmitted to hospital and is going through various procedures and Chemo. What are the chances of both of us going through similar operations and Chemo at the same time.?

Blog 32 Saturday 10th September 2011

I am off to Northampton Three Shires Hospital on Monday to meet my surgeon David A Ratliff MD FRCP FRCS Mr David Ratliff is a Consultant Vascular, Laparoscopic Surgeon, and will be performing the operation to insert the     Porta Cath into my chest. A portacath consists of a reservoir (the portal) and a tube (the catheter). The portal is implanted under the skin in the upper chest. It appears as a bump under the skin.  The catheter runs in a tunnel under the skin, going over the collar bone and then enters the large vein in the lower neck (the internal jugular vein). Since it is completely internal  bathing is not a problem. The septum of the portal is made of a special self-sealing silicone rubber. It can be punctured up to one thousand times and therefore can be used for many years. (Hopefully not required for too many years) The appointment to have the Porta Cath inserted is Wednesday 14th September 2011.

I will then start my Chemotherapy the following week. It has been arranged that I will have the nurse come to our home to administer the drugs for the next six months..... brilliant!!!! I could not handle having to drive or be driven to hospital. I am so pleased that this is the way forward, It seems to make it easier and especially for Wendy, who would have had to drive me. Wendy has a very stressful job and I do not want to give her any more stress in her life.

I have also had a visit from Macmillan Cancer Support who are presently looking into benefits that I may be able to claim...............There are certain benefits that are available for Chemotherapy Cancer patients, as well as assistance if the patient is suffering financially. A very worthwhile charity who support many cancer suffers in a far worst position medically than I.  Please support Macmillan if you have the opportunity.

Blog 31 Tuesday 6th September 2011

My appointment with Dr Macmillan yesterday was scary..... I am to start a 6 month period of Chemotherapy. Next week I have to attend Northampton general hospital to receive an implant in my chest under local anesthetic .

The line will be put in at the hospital by a doctor or specially trained nurse.  my neck will be checked for a suitable vein using a small ultrasound machine. The area where the line is to be inserted is cleaned with an antiseptic solution.   A small cut is made in the skin near my collarbone (the insertion site) and the tip of the line is gently threaded into a large vein towards the heart. The other end of the line is then tunnelled under the skin to reach the exit site. The exit site is placed under my skin and stitched in which acts like a reservoir for the insertion of the drugs via Intravenous Injection without exposing anything for possible infection.    I will have a chest x-ray to make sure that the line is put in the right place.   For a few days I am likely to have some discomfort where it has been tunnelled under the skin.

Position of a central line
View a large copy of the position of a central line image|

I am to receive Chemotherapy every two weeks for 6 months and will be receiving a drug called Oxaliplatin 5FU with Folinic Acid   Folinic Acid is not a Chemotherapy drug but is given to make the Oxaliplatin more effective and to cut down on side effects This combination of chemotherapy is sometimes referred to as the FOLFOX regimen, named after the drugs used. There are several different FOLFOX schedules that vary in the way the 5FU is given. The different schedules are given a number, such as FOLFOX4 or FOLFOX6. Dr Macmillan  refered to the combination of these drugs as oxaliplatin modified de Gramont (OxMdG).

I will be receiving FolFox 6 the different numbers Folfox 1 through to 7 is I believe the differing amount in mg of the drug Oxaliplatin. The reason I say the appointment was scary was because all the unfamiliar names, procedures and side effects. I have been assured that the side effects are treated  considerably better now than they were a few years ago...........

 Hey!!!! I have just received a reassuring phone call from Macmillan Cancer Support (same name but nothing to do with my Oncologist Dr Macmillan) .........................that was a nice surprise!!

My drugs will be administered over a 46 hour period via a continuous intravenous infusion and Dr Macmillan said the device resembles something the size of an orange I cannot begin to understand but I am sure it will all become very clear soon.

I always take  Wendy with me when I go into these consultations as it always happens that  half way through the consult I can see the doctors lips moving and I know he is talking to me, but I cannot take in or understand what is being said !!!!! I think  my brain switches to defence mode or something.

I have been assured that my hair will NOT fallout but I will suffer Nausea, Vomiting, and Hypersensitivity, in my fingers and toes, as pins and needles the severity of which will be closely monitored.  As the drugs given kill off good cells as well as the bad I have been told that I cannot afford to get a virus or infection in any form and will be immediately admitted to hospital  if this should happen.........well here goes..............................................!!!!!!!!!!

Blog 30 Friday 2nd September 2011

Weird thing, today I received a letter informing me I had my NHS appointment with Bowel Cancer surgeon El- Rabaa,  brought forward a month, from November to 3rd October great !!!! but I also had a call back from Dr Macmillan (Oncologist) and have secured an appointment in Northampton for consultation on the afternoon of Monday 5th September 2011. even better!!. Just when you think things are slowing down, and your case is being left on the back burner things start happening again. There is so much information about chemotherapy available on-line different treatments different medicine and all for different cancers.  I have stopped reading it until after the consultation.

Blog 29 Wednesday 31st August 2011

My appointment at the local GP again raised questions regarding Chemotherapy, at last it was making sense nobody was talking about Chemo as apparently nothing will be done until at least 6 weeks after surgery. My previous experiences of an Oncologist in Australia following my bowel cancer operation was very brief and cost a fortune. I was told back in November 2009 by my, then, Oncologist that I did not need Chemotherapy. I was told my prognosis was good for the future, and I was told that it was believed that the cancer had not spread. I can remember walking out of the Oncologists office into the Australian sun feeling very relieved........................

Having now had the cancer spread to both lungs I am now relieved once again, as today I received an authorisation number from our health care to contact Mr Craig Macmillan Consultant Clinical Oncologist   Craig Macmillan has a consultancy in the grounds of Kettering General Hospital, so not too far to travel once an appointment is made.

Blog 28 Tuesday 30th August 2011

Received some literature through the post from Macmillan Cancer Support  "The emotional effects of cancer" and "A guide to benefits and financial help for people affected by cancer" there is a wealth of support out there for persons suffering from cancer or carers for sufferers. I don't feel that I am at that stage yet, that I have been emotionally effected by my experiences, maybe because I am lucky enough to have the support from family and friends. There is also information for volunteering etc great advice and loads of information.

Today I have an appointment back at Great Oakley Medical Centre following the 7 day course of anti-biotic. I feel a lot better now the additional stitches have been removed and everything has at last healed. My left side (Chest) is still completely numb from the surgery and my back aches when standing or laying in certain positions. This should all go with time................. Coughing and Laughing is still very painful, so I am officially "Grumpy" according to my wife and daughter!!!!!

Blog 27 Friday 26th August 2011

After a few days of anti-biotic, I was still not healing as normal and still in pain. It is now a month since my Op !!  I decided to check all the incisions and found a further three stitches that had not been removed !!!! ........with tweezers in hand and a pair of scissors ...........snip......... these are the elasticated type stitches, which are suppose to dissolve, so you pull till it won't come any further (and hurts), snip!!!!! and it disappears back inside.

Finally the healing process can begin......... having removed all the foreign bodies the anti biotic can now work. I have been trying to get hold of the specialist bowel nurse to Mr Al-Rabaa, Katie Gardener,  and find out further, regarding possible Chemo therapy. I have left a message and now tried ring back, to no avail ......My next appointment with Al Rabaa is in November and I do not want to wait that long. I spoke to Michael last week, the chap that was in High Dependency with me, He is back in hospital today having his second lung operated on.

In hindsight I'm sure that would have been a better option for me to have one at a time.....  

Blog 26 Monday 22nd August 2011

Appointment with Dr Joanna Watts today at the Great Oakley Medical Centre. Dr Watts has shown an interest in my case and is a wealth of information, she also found two stitches that had been missed (in fact she found one and Hope found the other) which was causing ongoing infection and associated pain, in two of my wounds. I am now on a 7 day course of Erythromycin 250mg Anti Biotics  hopefully this will now be cleared up and I can sleep at night!!!! I have been booked for a further appointment next week and a further appointment for a scan on my hand (at the site of the canulla) which I thought was to be today.

Great news Dr Watts also gave me the results of the Biopsy's and Polyp removed from my colon during the recent colonoscopy. All Clear !!!! brilliant, one less thing to worry about. 

Blog 25 Sunday 21st August 2011

We have been away for a few days, to stay with our friends in Southwick "Bill & Trish" (Thanks again you guys) Southwick is close to my folks and family in Worthing and within a short distance to Brighton. I was born in Brighton and never tire of the place. We also took "Jack" our Black Labrador. Jack discovered the Sea for the first time, and it was amazing to watch his antics.

Across the lock gates at Southwick

 Wendy discovered that her fear of heights, did not affect her sudden insane wish to complete a "Reverse Bungy Jump" We had some good laughs with my family, walked around Brighton, dragged around Brighton Pier by my daughter Hope, and generally had a great time.

Wendy Reverse Bungy "Screaming"

This was a good way of forgetting about the reason for this Blog ie the Cancer I have yet to receive the results of the Colonoscopy biopsy's recently taken. Tomorrow I am at my local GP to check out the reason for the lingering pain in my left hand at the site of the cannula and to discuss, in the GP words "Pull Together" all the information.   

Blog 24 Friday 12th August 2011

Today is the day of my next colonoscopy. Wendy drove me to Kettering General Hospital, as I am not allowed to drive after the procedure. We had a fairly long wait, but once taken through, things tended  to run like clockwork; ie blood pressure, consent form, health forms questionnaire, interview with the Doctor.

Into the hospital gown and away. I was told the Klean-prep solution that I have been drinking makes you de-hydrated, "well yes, having spent the entire previous day running to the toilet,  I am aware of that".. and guess what, the nurse couldn't find a vein in my right hand to insert the cannula but it hurt like hell when they were trying. The Cannula is  for my Pethidine (pain killer) and Sedation.

Anyone reading this blog may remember, I suspect that I have something left in the vein of my left hand, following the cannula inserted last time. The inflammation is still there as well as the pain, but everyone seems to think it will go down with time,
"I don't think so"..... I am waiting for my ultra sound scan of this hand to verify...

The doctor inserted the cannula in my right arm further up and yep we are away. After the Pethidine and sedation, I almost fell asleep , it is merely a sedation, so I was able to watch everything on the monitor. Unfortunately, once again, I am faced with a Polyp  growing in my bowel, which was hastily removed by the doctor. Thoughts of my previous colonoscopy in Australia, when they found my original bowel cancer, came flooding back. Having had 29 Cm's removed already I can't afford to have much more taken out!!!!!!!

The doctor also removed two biopsy samples from my colon wall, and again, I now need to wait a further Seven days for the results...........

Having not eaten for two days.  Wendy took me straight to the Fish & Chip shop. Hope and I enjoyed Fish & Chips until we could not eat any more!!!!!!!!!

Blog 23 Thursday 11th August 2011

I made myself a lovely Kedgeree with smoked haddock for breakfast yesterday  I then gave up eating at midday as instructed. Today I have only drunk the Klean-Prep previously mentioned, I had to drink a litre of this disgusting preparation, every hour for four hours, to clear my bowel. It is dreadful but necessary in readiness for my Colonoscopy tomorrow. Whilst this was all going on, I was trying to watch England play India cricket at Edgbaston, I actually managed to miss every wicket in my running to the toilet and back so many times!!! After my appointment tomorrow its straight to the kebab shop !!!!   

Blog 22 Tuesday 9th August 2011

Early appointment today with Mr Waller my surgeon, Wendy and I made our way to the Leicester Spire hospital . We met Michael who was also in the waiting room. Michael was the person I previously mentioned that was in the HDU (high dependency unit) with me undergoing the same surgery but had complications. It was so nice to chat with him and his wife again.  Our first task today was to have a chest x-ray prior to seeing Mr Waller. "Things aren't as bad as we thought" were the words that greeted us from Mr Waller. Only two of the four tumours removed were cancerous, one from each lung. It was agreed that I am healing well, and the pain presently being suffered would go in time. The prognosis seems to be good and referral back to the bowel cancer specialist Mr El-Rebaa has been done.

We asked the burning question regarding chemotherapy which will only be on a further referral from Mr El-Rebaa. I am back in the 3 monthly CT scan cycle with my next CT Scan on 28th October 2011.

My medical insurance has advised me not to have chemo privately as certain drugs for my treatment are expensive and not offered by the NHS, so the thinking is to have chemo on the NHS and get the drugs privately. Its all too much to think about at the moment.  I've come away from the appointment feeling far better and again being able to see into the future further than 6 months...............

On my return home today I received a phone call from Kettering General Hospital. Mr El-Rabaa has ordered a colonoscopy for me and this is arranged for this Friday 12th August. This will be my third colonoscopy in as many years, but it doesn't get any easier. I owe my life to my first colonoscopy.......

I have been given Klean-Prep in a word, it is a disgusting !! preparation mixed with water (1.5 litres) x Four sachets to be taken the day before. No eating Baaaaaaaaaaaaaaaaahhhhhhhhhhhh!!!   the day before and only boiled fish or chicken, two days before which is Oh yes Tomorrow!!!.

As stated, the first colonoscopy, I believe, saved my life or at least has pro-longed it. Again I urge anyone reading this blog, to PLEASE, have a colonoscopy, or at least get advice from Your GP if you are 45 years of age upwards, like me, you may not have any symptoms for a few years!!!!!!!


 

Blog 21 Saturday 6th August 2011

MY HEART GOES OUT TO MY SONS  "Jonathan", "Matthew", and "Jarrod" .

My sons mum, 'Janice', whom I was married to for 15 years, has been admitted to hospital in Oxford, diagnosed with cancer and will soon be going through a serious operation ....they are devastated .....they were strong for me recently,.............. they have to face it all over again with their mum......

Words cannot describe how these young lives, including my daughter Hope, with everything to look forward too in life,  has to deal with this burden at their early years...... A reality check ...a sudden train smash. I feel so sorry for what they are going through. Suddenly my cancer  pales into insignificants, material things mean nothing to me any longer, my family is everything............

Wendy, and her mum, Sue, drove to Biscester yesterday and took the boys, together with Victoria, Jonathans fiancee out to lunch, . Unfortunately I was in too much pain to travel that far.  Jarrod came back with Wendy and spent a great afternoon with me supping home made white wine in the garden and an evening of movies brilliant!!!!!

Tuesday next week is when I return to Mr Waller to hear the results of what has been removed from my lungs following the  histology report. Everyone says "You must stay positive" I am positive .......and pessimistic ..is that possible??

Hope's Blog

I would like to thank you daddy for thinking about us and it is a horrid word
C A N C E R!!!!!!! When you here the word cancer you stop and think, and you think everything is going to get bad, then worse. That's what I thought in Australia when I first heared the word, I didn't really think he would have to go back to the hospital but I was wrong, so now I'm heart broken again but I know daddy's going to be fine.

Blog 20 Wednesday 3rd August 2011

We should now be in Portugal. Our planned trip to Spain/Portugal has obviously been interupted by events but hey!! never mind, thats for another year!!

I had my appointment with the specialist Mr El -Rabaa on Monday  which actually turned into me being seen by a Mr Solomen, whom I hadn't met. I feel this was a wasted appointment. No information has come through from my last op, and all that really happened was my bandages were changed again. We were however able to ask more questions. Chemotherapy  was discussed and Mr Solomen said that I still may not be offered Chemo. It is apparently not a foregone conclusion.

I took the opportunity to tell Mr Solomen that both sides of my chest were still completely numb after the surgery two weeks ago, but again apparently this is completely normal for what my "insides" have been through. It feels like they have parked a shopping trolley in there!!!!!! My lungs however are still incredibly painful, and still giving problems with sleeping.

Wendy's Mum, Sue, has arrived from South Africa and is doing a great job with Hope, keeping her busy baking, pressing wild flowers, reading  etc etc makes me feel a lot better as just a short trip to West Lodge rural centre a local animal fun farm yesterday for Hope , left me breathless and very sore. I then slept all afternoon................Still seeing the blog page reviews going up and the cluster map filling up ... Thanks once again..... its sorta therapy for me, and keeping me sane. It is so nice to know that people and friends/family are keeping in touch and following with me.

Blog 19 Friday 29th July 2011

Well today is the day to return back to our local GP for my stitches to be removed by the nurse. It is also the day that I appear to have developed a sore throat and a very painful left hand, around the area that a cannula was placed into my hand during surgery. I was to have the bandages removed and refreshed. The nurse found, two of the wounds on my back, have become infected. The nurse cleaned and redressed the infected wounds  and prescribed Flucloxacillin. This is a  penicillin anti biotic which would also be good for my throat.........and possible for my hand..........and ..... 

Whilst investigating the pain in my hand, left by the cannula,  the nurse was obviously concerned and asked for a second opinion from the Doctor in the surgery. Dr Watts was called and investigated. I was prescribed "Ibuleve" which is a penetrating, anti inflammatory, pain killing gel. I noticed the expressions on the nurse and doctors faces and I am  know getting quite worried. I have been told that there is a small chance that "something" may have been left in my vein from the cannula. OOOHHHHH Brilliant !!!! I thought .................. Dr Watts has asked that if no better by next week an ultra sound scan will be done on the vein to check if any foreign bodies; LIKE PLASTIC TUBE, is still in my vein ......................??? 

As previously discussed in the early part of this blog I have had a "Cesarean" to remove the original Bowel Cancer,............ later on I was destined to have an "Epidural" for pain relief,............. and now and ultra sound scan............................ All the above normally associated with childbirth .................. NO I am not pregnant and never was !!!

Having the stitches removed and the infection cleaned out, I feel a lot easier and can move more freely. I am sooooooooo looking forward to my bed tonight, to see if I can actually sleep better!!........ On Monday 1st August 2011 I am back in front of Mr Al-Rebaa  my colorectal surgeon specialist in Corby. Things are moving quickly now, questions are being answered.

 I also learnt today that as a cancer patient I qualify for free prescription's  Yey!!!! thanks Mr Cameron, its the first free thing in my working life from the government. Hope is now on school holidays for six weeks and Wendy finishes today for three weeks holiday ....She deserves it.

Blog 18 Monday 25th July 2011

I am able to move around quite easily, but the pain in my chest stops me in my tracks every so often, especially when I have an unsolicited cough. The incision wounds are healing quite nicely on either side of my back, and Wendy has been able to remove some of the dressings. I have an appointment on Friday 29th July at my local surgery to have the remaining stitches removed.  On my disharge I was prescribed "Tylex" painkillers, which I assume are the strongest tablet painkiller for my case but it sometimes doesn't feel that they are doing anything. Sleeping is still a problem, I cannot sleep on my side as I usually do, sleeping flat out on my front gives chest pain and breathlessness. Sleeping on my back, raised with four pillows is probably the easiest but not natural for me so I keep waking up. Wendy says I snore even worst than before in this position. Nany naps and moaning for the next week I think ..............

Healing nicely !!!!!

Blog 17 Friday 22nd July 2011

I have been discharged!!!!The nursing staff of the Spire in Leicester ward two and Mr Waller were fantastic and I'm very thankful to them all. I met a chap called Michael in the High dependency unit going through the same procedure as me. Michael had also had the disease in his liver some years ago as well as Bowel Cancer. It was good to talk to Michael as he was the only other cancer sufferer that I had spoken to since my original operation. Unfortunately Michael had complications and at 01.30 am all the lights in the HDU went on. Michael was in severe pain, on-call theatre staff were called in and eventually at 05.00 he was taken back to theatre for a secondary procedure. I am still in a lot of pain but now the pain is in my back, I have been discharged with three boxes of painkillers and some fresh bandages. I left with warnings from the nursing staff "Don't do too much" and "Keep the compression socks on". I have slept all day........................Wendy has just changed one of my bandages as it was weeping quite badly but all in all the nursing staff and Wendy has confirmed the scars are very "Neat" and should heal well. My back feels as if it's on fire.........  As promised some photos .......

High Dependency Unit, Just out of Recovery

Nurse Wendy
attending my every need! 

 Very much still under anasthetic

 The dreaded "Chest Drain"

 Other "Chest Drain"

The arrows were drawn on me
by Mr Waller prior to surgery (Scary)

Nurse Wendy

What would I do without her

I have already made enquiries about Chemotherapy but must wait for the histology results I'm very tired and incredibly sore I'm going back to bed .....................