Day 93 - Emotional wreck

The enforced stay of being at home is not good for me. Whilst I was able and now fit enough to drive into Exeter yesterday to buy a new addition to my blow up range! oh err Mrs! Matron pray explain, 9 foot of tender boat you fool a certain amount of time does get used in front the TV in particular when topping up with liquid food. Yesterday afternoon I had the choice of Khartoum, Tale of Two Cities and a programme about a bunch of USA makeover artists extremists knock down your house and rebuild it within 7 days.

I decided to watch all three through a process of channel hopping and timing commercial breaks. At the end of all three I found myself sobbing, sobbing for the family who have had their house rebuilt because they are real good eggs and help someone child with bone marrow donation, sobbing because Dirk Bogarde going to an innocent death and as for the last film who needed a cause? The whole thing brought the fact home that I am getting better and quite frankly the morphine reducing and allowing me my life back again. Yipee

I forgot to tell you that the only time I have "medical issues" is now waking up hour. I think half my problem is a chesty cough at the the mo judging by the rubbish I cough up in the morning. Although pain reduces when stable and not coughing, I am not sure certain things are healing, though not coughing now should be an achievement. Inside my throat its is still very sore, although taste has has come back. I am not sure when I will be able to find a nice bland solid, but might try baby food at the end of the week to give it a try as I'm fed up with nasal tubes and to be honest they will want it out soon judging by my last convesation!

Spring water goes done very well as does milk, so at least I will live but one of the funny things is I have lost the sense and ability to regulate what I drink, using a straw as I gulp its hard to stop and with taste coming back water is even more tastier. I would imagine anything fizzy would result in bubbles coming through your nose :)

Yes everyday does make me better, its a long recovery, too long for me but sitting it out has it strengths but a whole sackful of downs better dash for my daily dose of district nurse intervention.

Speak soon Nigel x

Day 92 - Recovering is not easy

I was warned that recovery can be a bad as the real thing, as the treatment is still working(she meant killing things) 7-10 days after. The RT nurses know their stuff and my mouth and throat has given me problems all weekend.

I saw the children yesterday and had a great time. When the kids left I went straight to bed, although tired decided to carry on sleeping when I woke up about 9pm. It was clear that I had a tickley cough, I have these before and you can imagine the havoc it causes a cough, sore mouth, neck, tounge and throat the last thing you wanted to do was to try and chuck up all night. I did the chesty cough, the one where there is nothing to come up but just rips your insides out. The first session at 2200 the next at 0430. You could imagine how emotionally weak this had left me, any act of putting liquids and fludis into my body becoming hard and painful.

I see each day as a piece in the recover jigsaw, all is fundamental to the last piece of full recover but I know it will be a few weeks before I "lose the tube" as my swallowing will need less nights than last night than more I am off to dream off.

Night all: x

PS:New fish 14 , Pain 4 out of 10! unless I cough then 8!

Day 91 - What use is a life jacket

My children are back from "Up North" and I have just been asked the question what use is a "life jacket 20k feet above sea level in a plane hurtling hundreds of MPH towards the ground as there is no sea between Exeter and Bradford" I said non what so ever so my son moved onto to his next question, what use are oxygen masks, ,,,blah blah.... you know the score.

Yes they are back and boy I have missed them big time, missed then not only in the 2 weeks they have been away but in the months I have been ill. I love them so dearly I have pacing around tonight just waiting for the plane to land down back in Devon and my children to be home.


I have been progressing well pain levels about 6/7s rather than 7/8s. First thing in the mornings have been tough with sore throat and mouth a wash with the tar like squirmy phlegm which makes me sound like a washed up 60's porno rock star who has one giggie too much the night before. Once the piankillers are in you loosen up and start the day with fending off a shed load of questions from the district Nurse.

One thing the NHS seriously needs to sort out is the consumption of garlic by its employees it seems the sweet district nurses are worse for shovelling in the stuff behind managers backs. With chemo you notice smell and food smells can make you vomit meters off, if fact the past 3/4 weeks virtually every doctor, nurse of member of catering staff with the exception of Yeo wards answer to Mrs Doyle "Maureen" reeks of the stuff.

There you are being injected by nurses saying mmm yes avoid this and that when it is their breath actually wanting to make you you puke, now not even the brave "Nigel" has thought of a way of tackling this one any suggestions!

Day 80 something - Home day 2

Pain levels : tongue, throat and mouth 7-10, a faller from yesterday's 8-10 unless coughing ten back to 9-10.

As I inspect the ferry house after my ordeal and few weeks away I note very little has changed except words. On of the longest set of statements and words are all around treatment. Terms like "treatment over, finished and completed" are used. This is because there are not tangible you cannot yet actually derive a benefit from a treatment such as you can when you have a painful tooth removed.

I have always said cancer treatments "radiotherapy and Chemo" are oxymorons and they may you feel worse before you are expected to get better.

Its now 7 days since my last full dose of radiotherapy I was too zonked to hold a party, to sicky to scream hurrah! and planin sensible not to kiss dirty unhallowed hospital floor, after all I know what goes on in there. My last 10 days stuck in hospital showed how lucky I was, my moving around the ward to make allowances for fellow patients who were dying was obvious, in fact I was told! The pain in voices of those who had been told earlier that there was no cure and that all they could do was to delay to inevitable. I am not going into fill detail here as I was too unwell to document anything down, but I felt this was my personal space, alone with my thoughts and others away from me.

The pain continues see my scientific laser display earlier up the screen. It is all in my throat but not long before drinks and food start making their way back down that hill.

Anyway need to go back and study my charts, as the wind is up and there is no sail today x N

Home!

battypatty says; Nigel is home now and being well looked after by his friend Orpah. He will have nurses coming in daily and the aim now is to build him back up. He is very tired and will spend a lot of time sleeping so if he does not update here for while that will be the reason. Thank you all for your messages of support and kind wishes. Now - Keep attacking, Nigel!!!!! xxx Pat.

Saturday 20th August

Ron wrote.
I saw Nigel today. He had asked me yesterday, if the Staff agreed, to take him home for a visit today. After checking that it was ok we drove to his home in Starcross taking a diversion to avoid the holiday traffic via Powderham. Saw the Deer in the Castle parklands but Nigel was not too aware of them. I dropped him, made sure he was alright and then went off to do some shopping watched a bit of the rugby and picked him up again at 5. He is a lot better than yesterday, still having trouble with his throat, but able to speak a little, still nodding off at times though. A fighter!!
He told me he hopes to be leaving the hospital on Monday afternoon, and this time he will get backing from the local hospicare nurses a daily visit to make sure he is able to cope with the pain etc.
I have the utmost respect for the medical team at the RD&E, which has been superb at all times but I do feel that there has not been the same support available for Nigel when he has been at home. If there had been then I am sure he would not have got into the state he found himself in last week. That is not the fault of the local hospicare, they would have helped I am sure if asked.

a day of 2 halves

battypatty says; had a text from Nigel in the morning to say he had never felt so ill and the pain was really bad. Went in to see him at lunch time and he looked so frail and fragile it was heart breaking. Holding his hand was like holding a child's hand it was so small and thin. BUT.........tea time we had another text from Nigel saying that the staff had said he was allowed to go home in the daytime and could we help? Ron has to go into Exeter to watch rugby trials so he agreed to pick him up, drop him at home and then fetch him on his way back ONLY if the staff are 100% behind him going home. If they are in any doubt then he stays in the hospital. I did have a chat with a doctor but not the one treating him. She said that they had decided to stop the last chemo session because of the bad reaction he had to the last one. It was now a question of just slowly building him up and then another case conference in about 6 weeks. Perhaps Nigel will add to the blog later, we shall see!!!! Pat.

message for "Big Ron" - his nephew Mark went in to see him yesterday - LOL.

just a quickie!

battypatty says; We have not been in to see Nigel to-day but I just spoke to Kevin who says he is a lot brighter to-day than he has been for a while. We will be in there t0-morrow so will give more details then. Thank you for your e-mails & e-jokes, keep them coming! Pat.

mail for Nigel c/o - therobs1@ntlworld.com

the end of the line?

battypatty says; I didn't get in to see Nigel as I had a bad night and I was just not up to it but Ron went in to TAKE HIM HIS PHONE ( hee hee ) and clean clothes etc. He had his last session of radio therapy to-day and there seems to be a feeling in the air that they may not now give him a last chemo session. He has accepted that he is ill and just needs to stay there and be "nursed", something which they are doing admirably. The NHS takes some knocking, and quite rightly sometimes, but Nigel can have no complaints about the way he has been treated. I know he has moaned because they have not jumped as fast at times as he would like but in a rational frame of mind he would agree with me. Ron says he is looking a lot better than a couple of days ago and is more alert. TY for your messages & jokes, he was very pleased with them. A belly laugh was not achieved but a smile is a wonderful thing to see. There is going to be a conflab to-morrow as to how they proceed and , of course, I will let you know. Pat.

my e-mail for messages to Nigel - therobs1@ntlworld.com

chemo postponed

battypatty says; Nigel rung earlier and said that they have cancelled his last chemo session as his health is just not up to it. He has a very low red blood cell count and they think he has a chest infection. They are going to get him fighting fit once more and then give him the chemo. He wants us to go in to-morrow ( not allowed to-day! - lol) but we are not going to be allowed to stay long and anyone who is not 100% well - STAY AWAY! mY E-MAIL address if you want to mail Nigel is , again, therobs1@ntlworld.com. Please send messages as I know he would really appreciate them - even if they are only a page of rude jokes! After all, do any of Nigel's friends know clean ones? Speaking to his friend Kevin, the oncology nurse, and he says that Nigel has seen the error of his ways and promises to stay there until they , THE EXPERTS, feel he should go home. Fingers crossed he keeps to it. At the moment he is just too ill to move. Ron has got him a new battery charger so Nigel & his phone will be re-united to-morrow. Pat.

not feeling too good

battypatty says; Nigel is not at all well at the moment. He is unable to speak much as his throat is so sore and we employed a kind of sign language and grunts. He is also receiving a high pain meds dosage and is not quite with us. We took in some clean clothes and picked up his dirty laundry ( he is still getting the women in his family to do his laundry! ), went and fetched a few things he wanted and left, He really was not up to visiting. Still, one bright light on the horizon - he now has a phone! It is just a bog standard thing, not like his all-singing, all-dancing thing but hey, beggars can't be choosers. It really broke me up to-day to see him like he is, we went up to get a coffee and I had a bit of a weep, wiped the tears away and went back smiling. So you see Nigel, I am not as hard as I like to make out. If anyone leaves a comment I copy them off and take them in to him and if anyone would like to send him an e-mail then send it to me at therobs1@ntlworld.com and I will make sure he gets it. I am sure he would love to hear from you. Pat.

Panic stations!!!!

battypatty says ; For anyone who knows Nigel well they will know just what this means! He rang to say that his mobile phone battery had run out and his battery charger was not re-charging it. NIGEL HAS NO PHONE!!!!!!. I promised to take mine in for him to-morrow and he can swap the sim card but hey guys, just imagine - Nigel with out a phone .ROFLMAO. For those of you who do not know my brother that well I should explain that when he was born they did not cut the umbilical cord - they cut the phone wire. I once asked him what he would do if they banned mobile phones and he said he would have to start talking to people. So, if you have not heard from Nigel, this is why.

just drifting..............

battypatty says; We rang the ward before going in to see Nigel as we were not sure he would be up to visitors and they said that he was on a pain control level that was allowing him to just drift in and out of sleep and they would prefer he stay that way. Apart from that - as well as can be expected. We will check with them again to-morrow and let you know. At least he is comfortable now.

giving in gracefully

The picture are the radiation beams.

battypatty says; Yesterday, when Nigel went on the ward for his check after RT, he was told that in their opinion he should stay in but Nigel, being Nigel, refused. He argued that they were having him on Monday for as long as it took and until then he would rather be in his own home. A sentiment I am sure we can all relate to. Not having heard from him at all, by phone or pc, we texted him this morning and said he must let us know he was ok. He was not and after ringing the hospital Nigel is now on his way to the ward where he will stay until they decide his treatment is finished. He has a large ulcer on the side of his mouth, constant reflux action and his pain control is not good. Once settled, hopefully he can just gather his strength for the final push next week. I know your thoughts and prayers are with him and I will keep you updated. Pat.

Day 81/82 - Keeping up appearances, again!

For those of us who have children the keeping up of ones self appearance can be hard, kerb stops to quell the near rebellion sounding "I need a wee" or the "daddy I am going to be sick "when now" but when you asked the question you knew your darling siblings cheeks were more to do with the vomit they have stored up rather that wind, as they let rip over their grandparents new leather sofa that grandfather was still polishing had just taken the wrappers off. Yesterday was a day very similar to that in my own life.

The children were safely dispatched via Flybe to Leeds/Bradford Airport from Exeter in a record 45 minutes against the usual 45 days by "Virgin on the ridiculous rail" I understand that William was the 1st to keep up appearances but shouting on landing "looks like we are all going to crash at his highest volume level" Good boy! as his sister went round selling look cute in pink death policies only 1 installment necessary.

I took the bus from their village, to mine, a 3 mile single trip in which stagecoach operates every 15 minutes. I managed to be sick on the bus, thank heavens for Tescos carrier bags and immediately stepping off the bus. Now the insertion of a large tube showing people that thing are not 100% in the food department is a give away however there is still personal embarrassment from an event happening in the 1st time. The sickness is foul, not only do we get the "feed" bag stuff reappear but the pain from my swollen neck and throat just adds to the fire.

I had the chance to stop my last chemo session next week and stop my RT to recover. But with more three more RT sessions after today and one more chemo next week I am looking forward to kissing the arse of cancer good bye as I drive off into the sunset on Wednesday.

I could have given up and said no more lets see how we got on, or come back in 2 weeks but I had set a plan in my life to complete the job on time no matter how painful, and boy next Wednesday at about 1230 when I walk out the RT room I hope it will be over x

I am keeping attacking! N

Day 80 - A touch of the spiritual unexpected

It was 2330 hours when I was able to slip down into my huge pillows and new bed linen on my 2nd night at home from hospital. The gentle purr of the food pump by my beside and my hand wandered to the huge emptiness of my king size bed with the anticipation that I will not forever have to endure the delicate moments of falling asleep and waking up alone in my bed.

As the Church clock struck the 1/4 to midnight chime I felt my head be raised and a warm glow in a halo effect come around my head and neck area. When I lifted my head I opened my eyes to see what was happening, it was like I was putting my face into a warm bowel of water and the pain, discomfort and difgurement had all gone from my tired body. It was relief raising my head and feeling a warm "ready brek" glow.

I knew something was not all that it seemed and within a minute the feeling and sensation had gone. I turned over only to have a sensation of falling 5 meters onto a hard surface landing in a heap and yes it did hurt. I had not gone anywhere but still in the bed in the position I had been in all along.

My mobile phone followed me in a fall as I heard it thud against the floor. Before you ask it did happen just a few minutes ago and I was determined to capture a written record before that was consigned to my mind.

It was not the medicine as none I take give hallucinations, perhaps its was something more powerful, any ideas?

N

Day 79 - Getting back to reality

I arrived back late last night. My hand was forced to leave hospital yesterday when I went for a mid afternoon snooze only to see the man with the “telescopic hair spray” sitting in bed opposite me. You can imagine my fright, was he going to reach for his soap bag, or was he in fact the grim reaper and a spray of his magic hair spray whips you away down under!

The feeding process went well last night apart from the frightening prospect of the tubes from my feeding machine and syringe driver trapped around my neck. Something I need to be careful off, after all come all this way just to strangle myself in the process!

My dreams are very vivid at the moment. There were two different dreams yesterday, which without the chance of having a pen around I have struggled to remember, however they all include an element of “letting off steam” and using my cancer as a positive to get things done. Both dreams were about expressing myself and how I truly feel about having cancer. I remember both dreams had me in public perspective and both involved me speaking or campaigning for causes I can recall the people that were there and those around me were those I felt comfortable with.

With the cancer treatment coming to an end it is clear that my mind is body and acutely aware that the end is nigh. There will be after treatment pain. But then it will be all about recovery. I am not quite sure what to expect after this massive medical, physical and emotional support the mechanism will withdraw and lead my life back to slow normality whatever that will be.

Well I have been up since 9am, all fed for the day, just waiting for my lift to the Hospital and things are good, just 7 more sessions to go!

A day of rest

battypatty says; Went in to see Nigel in hospital to-day but we did not stay long as he was very tired and not really in the mood for entertaining. So, it was a brief chat, inspect all his equipment, read his cards and leave. As I say he is feeling very tired but apart from that a lot better in himself. He is nicely cocooned in there, all food & meds are going in his tube and he is a lot more comfortable. He is starting to crank up the political machine again - lol. He may come out to-morrow but is taking each day as it comes.

Day 76 - Keeping up appearances, Thursday 4th.

Nigel has written this and I shall endeavour to read it! ( at least we know the spelling will be better - hee hee );

One of the first things that go when you are in hospital is keeping up one's personal appearance. This is mainly because you feel that you do not wish to compete with the nursing staff who hold the key to the enema cupboard but after a leg amputation it is always difficult to focus your mind on putting on your best lippie and setting your hair in rollers. However, keeping up appearances is so important in this modern world, after all what's a leg between friends, well depending where you live in the world it could be a roast dinner.
One thing about hospital that is much like prison is that you cannot chose your cell mates.If we are all honest we would rather be stuck in a cell with clingy "Craig" from Big Brother rather than a rampant Mike Tyson lookalike who likes to be called Daddy. I have three bedroom sharing colleagues all with various types of cancer and all at different stages. None have symptons that would scare children but certainly 2 of them warrant the attentions of this column. I have not changed the names to protect the guilty so will deal with these 2 characters in turn. Opposite me is Mr. Smith, mid to late 70's - spotless slippers(?) , silk dressing gown and the looks of Roger Moore. The one thing that did strike me was he had this amazing head of perfectly coiffured jet black hair and shiny white teeth. In my observations of him over the past few days he is the sort of bloke my mother warned me about. Rather than Roger Moore he reminds me of the childcatcher in Chitty Chitty Bang Bang. He has no ? belongings except his soap bag. This morning I managed to get a tablet stuck in my throat. The effect of this being that my mouth foamed and I looked like a rabid dog. The giveaway was the cages (?) and the nursing staff dressed up like 5th century Chinese warriors and prodding me with an electric cattle prod. ( Okay Nigel, just what drugs are you on? lol ) Whilst I was frothing at the mouth I saw the childcatcher fetch from his only possesssion, his soapbag, a huge aerosol can which because of its size I can only imagine he obtained from an Australian crop spraying Uncle. It was huge, in fact I am sure it was telescopic, the aerosol just kept on coming! It was industrial, huge and at one stage I was convinced it was inflatable! For the next 2 minutes terror reigned on the ward - Childcatcher was spraying his hair.I could see leaves being ripped off the bush outside, I could hear the gas attack sirens going off at Devonport Dockyard and his fellow room mates were flattened to the boards by this toxic hairspray. "Roger" continued to spray his raven mane whilst the rest of us were looking for the escape hatch and calls were made to Scotland Yard about chemical weapons attack. I am convinced that George Bush would have invaded! Then, with the speed of a minicab running late, he managed to return it to the small soap bag!!! I maintained a watch on him for other self grooming products (?) from the soap bag but alas, my entertainment for the day was focused on cricket.
Thursday was a good day in terms of health. I must admit Monday, Tuesday & Wednesday this week were energy sapping, emotionally draining days. I was at my weakest and was finally glad I said "Please help me".
Swallowing is now virtually impossible as everything including liquid food, medicine and water now goes through the nasal tube. The nasal tube will be replaced next week by a PTB (?) tube. It is a tube which is inserted directly into your stomach. Whilst the nasal tube is not painful whilst it is in ( inserting it was a real screamer!) it is very cumbersome and unwieldy to use but it is effective and has for the past 3 days kept me alive. The PTB is unobtrusive and non-visual and it will be in for the one week remaing of treatment plus the few weeks after whilst my throat and mouth recover. When I had my nasal tube fitted at the second go I was scoped to check on the state of my throat. The exact words used were " You poor thing, I can see why you are in so much pain". My throat is in shreds, ripped apart because of the radiotherapy and ripped further apart by the repeated sickness.
I have none of the anxiousness(?) I had before about Yeo Ward. They had made me better this week and for that I am grateful however much the inconvenience of staying in hospital.

P.S. - Lizzie has passed her MOT and for £200 - what a bargain!

just a brief line

battypatty says; We have not been in to see Nigel to-day but he says he is ok and he is getting "food" in him and you will all be pleased to know "bodily functions" have been restored! :-). Paul ( his nephew ) went in to see him to-day but he was asleep and he said he just did not have the heart to give his tubes a yank because he looked so peaceful. Fingers crossed for going home to-morrow. He said, in a text, that he has it all written down so wait for the blow by blow account!!!!!!! Pat.

don't speak too soon!!!!

battypatty says; they have succeeded in putting the nasal feeding tube in to-day and he has started having his first "meal" in quite a few days. The bag takes 24hrs to go through and then they are going to show him how to do the next one so he should be going home on Friday. His friend Kevin, the oncology nurse, is going home with him and staying for the weekend so he will be well looked after. I didn't manage to get in there to-day but Ron went in as Nigel wanted more things fetching from home. He says that he is looking about 500% better ( men do love to exaggerate!) and there is a spark back in his eyes that had gone missing in the last few days. Despite this, he is , of course, not feeling at all well and is raising no fuss about how soon he can go home. Pat.

the best laid plans of mice and men etc........

battypatty says; Went in to see Nigel this afternoon but he was not really up to visitors so we bought him a couple of papers and left. He was very lethargic and I believe he is on analgesia. He had not, at that point, had the nasal tube fitted but they were getting ready to do it. I had a text a couple of hours later to say they had failed in their efforts to put it in and the whole procedure was a nightmare. I am guessing here but I would imagine it has got to the point where his throat is too swollen to allow access for the tube and I fear this may now mean he will have to have a stomach tube fitted. I know this , more than anything, is the thing he really fought against but he must get nourishment in him. I just wanted to give him a big hug and take his pain to myself. Will update as and when, Pat.

Sanity has prevailed!

battypatty says; Nigel has been admitted to Yeo Ward to have a nasal tube fitted so hopefully he will now start getting the sustenance he so badly needs. He is very de-hydrated and expects to remain in there for about 3 days. I hope to get in to see him to-morrow and will update you. Thank you all for caring, xxxxxx Pat.