Wednesday, July 06, 2005

Day 43/44/45 - Radiation and Chemo begins


I spent all day in fear of my visit to Yeo ward, not in fear of the ward by fear of returning to the hospital that caused me pain. I bare the hospital no ill will but my mind associates it with the neck dissection and the removal of the tonsil and wisdom tooth. I told you my fears were irrational but unless you have been in this position it must be difficult to understand.

I am very disappointed because I did not have a room and bed with a view of the pool equipped with a mini-bar. How bloody pointless it is to have a mate on the inside, young Kevin “I fell over and fractured my hand” if you cannot secure a room with a mini-bar and a view of the pool. He is a councillor after all what chance have you got of getting your pavement fixed! Rant over!

The 24 I will be here has quickly extended to 48 hours, as I now know, I was warned that the whole process tomorrow would take 20 hours, and whilst I am at it a huge does of radiotherapy in the middle.

I had my first dose of radiotherapy today quite frankly a horrific experience. The session did not start well as I was due to have the 1650 session, which with the lights being turned off and most of the staff leaving it was clear I was the on the graveyard shift! I wonder where that expression comes from I suspect it relates to some historical event of the past when gravediggers were required to work three shifts.

The skeleton staff (I know its awful) spent ages setting me up. I was led to believe that the set up stages had taken place, but no, more staging and photographs took place, which meant not only was my neck bent back in the near impossible position but I was also subjected to 20 minutes in the mask. I took away lots of suggestions from my friends about what to think about in the mask, but alas it was no good. The fear that grips you not from the mask but from being out of control is very scary. I found my mask a tomb, and all those thoughts including Miss Whiplash, no matter how pleasant in normal circumstances were far from mind.

The radiation is shot at you through a very large x-ray machine, which direct beams to your body around the mask, these areas established by the intensive planning and the consultants experience. I have to have three blasts of radiation per session, the machine and table moves you around with the precision of ballroom dancers and positions you ready for your next dose. I felt the radiation rays as the machine switched on and sent the zap into my body. I was aware that the machine was doing its job, the hair on my arms and legs stood out and flattened when the beam was over. The mask was trapping my neck, and I could feel the throbbing of my veins against my mask, at one point I thought the rays were burning the mask and melting it with the rays as I could feel it rise and fall. The thoughts that rushed through my mind were more based upon if it is doing that to my mask what is it doing to my skin. I was quickly able to establish that the mask was not burning and although painless I was racked with fear.

The ward has some friendly faces, Kevin for obviously reasons and young Jody, remember her from Otter ward that showed me such compassion on the second day after my operation. She has finally secured a job on Abbey ward, and can assure you the patients of Abbey ward will be very lucky to have an amazingly caring person working for them.

I was very glad to see my dear pal O managed to struggle in through the tidal wave and snow from Exminster to present me strawberries and cream. I came back to the ward very shell shocked and dazed, in fact so much so I had a Delia moment, I wanted to go home, I was told my treat will start at midnight which means I will be lucky to have it finished by 2200 hours tomorrow night. This threw me meaning one more night in hospital.

The radiotherapy made me dizzy and made my jaw ache, in fact I was concerned that my teeth that had fillings in had become irradiated and had this vision of me walking around with a green shiny mouth.

It is getting late but I better have some sleep and prepare for the main feature which is the midnight appointment with drip, once again my body will have pain inflected on it, I can wait!

There was a very interesting Delia moment I thought for one moment I would never see my children, Kevin once again came to the rescue even calling the ward I am sure as a threat for me to behave and be sensible. I can honestly say I felt at my lowest just before the treatment started.

The reason was simple I had a great day with the children on Sunday and it was clear that I wanted that to continue for ever, I have so much to do in life and maybe a dad again and I was about to lose the chance. In addition, surgery has tangible results, an extracted wisdom tooth, a removed tonsil or a neck dissection. Radiotherapy and Chemo gives you no immediate tangible benefits in fact dis-benefits in terms of the wellbeing and pain factor. I am aware that the whole process ensures long-term benefits but they are a long way from reality at the current time.


It is midnight and the canella is in and Sophie kicks off the marathon session which will last 20 plus hours, for the next 6 hours it will be fluids to hydrate me, then a solution that will protect the lining of the bladder, on each occasion a small wash of sodium takes place in between. After the marathon session of hydration comes the anti sickness drugs.

I did not sleep well on one side I had the canella attached to my new friend the Graseby 500 modular infusion pump, from now on called Mr Arsey to keep things cultured like. The other my shoulder and neck which had once again been contorted backwards by yesterdays “radiotherapy sessions.

The chemotherapy drug cisplatin has a side effect of making you very sick, so hopefully the anti drug will work. It was about 6 am when the real pain of the event kicked in. The bladder-lining drug was ice cold, and for 45 mins the pain got slowly worse. As the ice feeling went up my arm it froze, I thought the canella was blocked because I had this pain before back in Otter ward. My fear was just as the prelim stuff had been concluded my vein was clogged. I waited until I could bear no more pain then pressed the bell I have still not leant not to be too blokie about pain, I pressed the bell and was relieved to see Sophie. I was introduced to another friend, whom I affectionately called the sheep; the aim of my new friend is too provide heat to an affected area. The temperature of the drugs being passed into my body are refrigerated and the reason my arm had became painful was that is was being nicely chilled by the drugs. I felt my lower right arm go numb as the pain grew intense a combination between searing heat and cold. I thought we had to replace the canella but Sophie to rescue with the “sheep” an electronic hot water blanket that saved the day; the sheep and myself had a meaningful relationship for most of the day.

It took nearly 9 hours to get the chemo started; from midnight I had the pre-fluids into me. The next stage was the chemo delivered by the acting ward manager in a blue smock that would not look out of place at a Freemasons meeting and the chemo is wrapped in blue bags concealing the fluid bags of cisplatin. The next 4 hours two bags of these toxic lifesavers drips into my body. The whole process of chemo infusion was over by 1300 but I still had another 9 hours of fluids which meant that at 2235, 22 hours and 35 minutes after the whole process commence it was over.

The process had its side effects no sooner were the fluid bottles removed then the sickness sets it, it’s a wretching without the sickness, a feeling of nausea and migraines hit straight away and remained with me.

During the day I had to attend my 2nd radiation session and already it is proving hard work, mainly because of the position you have to assume but also the feeling the therapy gives you. I was acutely aware that radiation does affect you whilst on the table. You feel your hairs stand up on end but for the first time I could feel the heat on the back on throat and the burning starting. My mouth has already lost the saliva
And the glands are clearly starting to become affected.

I had to be taken back to the ward, as the walk of just 100 metres was too much.


I slept relatively well more to do with the “happy” sleeping pills but only to awoken by a fellow residents pump and an age to replace the bag which meant all the punters were woken up!

Today I feel tired, and sick today as well as very emotional and to be frank “fucked” I was offered the PEG feeding tube today which is inserted into you stomach and you get fed by a tube, because in three weeks the medics think I will be unable to eat properly.

I was fortunate enough to have done enough research to know that only if it absolutely necessary and blending, complan and smoothing fails will I resort to the PEG. If is the first time I have said no to my medical experts I can go back and say yes please in the future, but it is my body and I know my strengths, that could all change in the next few weeks.

I am at home thank you for your lovely messages and will be in touch with you very soon, please forgive me if you cannot get through to me, if the phone diverts I am likely to be snoozing so do not get upset.

It is only 4pm but feel a snooze in my own bed, before I am ill again is most overdue!

Best wishes keep attacking Nigel x

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