A note to all those that have given us so much thought with many gifts, cards, emails and phone calls. Mandy and I are bowled over by the amount of people all over the world that have supported us through this most testing of times and particularly to those that have contacted us having acknowledged the ending of the treatment. Thank you.

Resoluteness Is The Vigour Of Sustainability (S Rush July 2010)

May 2011

6th. A very important date for us today as it is exactly a year since I finished my treatment which ended in Radiotherapy after Chemotherapy. To be cancer free for 12 months after treatment is simply brilliant. I could not see myself at this point, I have been left wondering if this all really happened or whether it was somebody else from another lifetime. People state certain periods of time that can be classed as milestones regarding the possibility of relapse. Some say 2 years others say 5 years and you are "cured". The word cure is not something doctors ever use during your lifetime and some say you are only cured when you die of something else! Non the less I am happy for 12 months of a cancer free state and look forward to reaching 2 and then a 5 year marker...I just have to.
Mixed emotions it seems has made me a touch sensitive to comments. I have had utterings of my cancer being "non serious" or the like and of late several people have had to bear the rough side of my tongue....and it has not been appreciated. I am going to put a list up of things that are commonly said, discussed, reasoned or blurted out to cancer patients and survivors alike.
More a list of comments, experiences, observations you may want to use carefully as some things are best kept to yourself.
I have a routine appointment coming up shortly and I feel "nothing" about it and certainly nothing like what those early appointments made us feel like!

February 2011

10th.  I decided on a more resilient approach on this appointment as my mouth issues were not resolved and things were on occasion getting worse so I decided to push a bit harder for a solution. Doc Osborne took the hint and told me to try salt mouth washes. He also prescribed a mouthwash that I hope will rid me of this curse. He sadly could offer no reasons as to why I have lost my facial and head hair where I was radiated during treatment. Bearing in mind that my hair grew back several months ago so to lose it now seems odd, as well as the mouth problems and illness I am hoping it is just a reaction to being ill coupled with a bit of stress.....sadly I have also noted (via Mandy's laughter) that I am now going thin on top....this is on top of the white half beard that I have been left with!
Regarding the other situation of the lump on my ribcage...it is still present but it is accompanied by pain and after an examination again the Doc is now not to concerned by it. I will keep my eye on it though. I discussed leaving the security of 3 monthly checkups with me looking forward to "putting it down" for at least 6 months. I added that it is nice to have a security blanket every 3 months but the checkups are a reminder of it's reason, something I am finding hard to let go of.
It is very surreal to think that on the 2nd of Feb last year I took one giant leap into the unknown that is chemotherapy. In one respect I feel it was not me but somebody else or some other life this occurred.....strange feelings indeed......but I am still here!

December 2010

2nd.  Today's appointment with my haematologist could not come soon enough in all honesty as the lump on the rear of my ribcage just needing putting to bed so that we could focus on enjoying our upcoming holiday which coincidentally was the rearranged trip from last year that we had to abandon due to my illness. I was determined nothing was going to stop us getting on that plane this time around I can tell you!
A slight hiccup on arrival at the hospital as nobody told us of what the procedure was regarding bloods taken etc. I booked in at my appointment time and after 50mins I was getting elbowed in the side about how long I had waited....I find it better to show patience in these circumstances but after about an hour I enquired to see if all was OK. It was not and it was explained that I should have gone to have my bloods taken before my appointment...it would have been nice if this would be explained as sometimes you are treated like you know procedures of this kind. Anyhow I was soon having a needle in the arm, hello darkness my old friend (could be a song in there) although it turned out to be one of the least painful robberies of blood I have had..hurraahh! Back into the waiting room where after an hour and a half we were in to see Dr Osborne.
Pleasantries out of the way and I was having my bumps felt. As I took my shirt off I had to remind the nurse (female) to keep her hands to herself to Mandy's embarrassment! A good examination was had of the few lumps that had come to my attention mainly due to them being problematic after my back troubles. In my mind I was happy that it was nothing but Mandy also needs answers in all fairness as well and the Doc says he's OK with the lumps. As expected I was told to keep an eye on them (like you can forget?) and if they increased in size then he would look again. I was happy to have a shorter gap before the next MOT next time around of 8 weeks so at least it's something when you know the pros have there eye on you too.
Thanks again for all those that have been in touch wishing me well. Mandy and I am still truly bowled over by the support and I can tell you it's made a big difference in my overall experience, so from Mandy and I a sincere and warm thank you.

November 2010

11th.  Hmmmm. Progress seems very slow with my mouth sores, in so much as I struggle with things, like alcohol, curries and other stingy things including toothpaste. This is a real blow as one of the things I really enjoy when visiting India is the food...and I like a fairly warm curry accompanied by a honeybee brandy. The dry mouth is something I am probably now stuck with but it is a small price to pay.
I have suffered a bad back of late in different ways, one due to a ruptured disc and the other being a fall on the decking whilst I was still suffering with the ruptured disc. This has coincided with me noting a lump in the kidney region that is attached to my rib cage. It's hard and becomes painful after a period of time after me touching it. The pain resonates and comes and goes. I shall monitor it's progress for now. The other strange thing is a phantom ache/pain in the collar bone region. I say phantom as it does not hurt to touch and it seems more like a toothache than anything else it is more on the right side but on occasion the left side also pains in sympathy. Another thing of note is that I have a continuing sore up my nasal cavity that pains when touched, similar to having a spot in your nose.  I have an appointment with my Haematologist booked on the 2nd December so I hope to put to bed my fears.
Apart from that all is well!

October 2010

25th.  It seems strange that it is 12 months to the day that I first felt the lump the changed my world. I can't believe it was me that this occurred to but who does believe? I never envisaged my life being back to a sort of normality but now that it has it feels like it happened ages ago when in fact it is only 5 months since I finished treatment. I have gained my fitness, lost over a stone in weight and importantly I have taken my first steps back into birding with a visit to my beloved Spurn point. I did not digiscope but it has helped reignite my birdwatching. The illness took away my spark for life but slowly I am regaining it.
I am still made aware that my memory is poor in some respects as I fumble for words and names at times. I also have the mouth issues but I am alive to complain about these issues so I am happy. I have panic moments when something in my body goes wrong and I think relapse but I have to keep slapping myself down.

September 2010

11th.  Well as one of my favourite songs from Elbow goes
"So throw those curtains wide one day like this a year'd see me right!"
The 9th was a sort of "B" day as opposed to "D" day as it was a battle of my B cells that have caused the problem. Mandy and I set off to my appointment to see my Haemotologist (last seen at the end of March) and I was looking for the all clear, or in real terms the phrase, remission.
Bloods were taken and tested and an examination was undergone with the chance for me to ask about concerns, fears or anything else. All this was done before I was told that magical "remission" was now all mine to keep. After a few serious points being made by all parties I was given the option of 8 or 12 weekly check ups....I was brave and chose the 12 weeks gap as I felt it was another way I could help myself accept that I no longer have cancer.
The trick now is to stay in remission!

I have congratulated myself in my mind of how I have felt about this ordeal so far. Whilst I accept my part in this journey I am sad yet happy that I have had certain people to help me along the way.
My beautiful wife and my father have been my companions through this and although I would never wish for anybody to have to face this kind of scenario at any point let alone so young, it truly is an experience that takes something from you whilst at the same time gives you something in return.
Andy & Dot a huge thank you for your support
Ken & Carol Thank you for keeping tabs on me and for caring. Yorkshire folk at there best.
To all others that have helped in so many ways a thank you to one and all.

August 2010

30th. Dare I say it but I have noticed that my cheek pain is getting less. I can now blow my cheeks up with little pain noted and this has coincided with the regular lesion type cuts that keep opening up at the back of the jaw line leaving much discomfort also not being present.
The tongue pain is still with me but I will be more than happy if things keep changing in this direction....however small. My appointment on the 9th September with my Haemotologist may be just a formality....except I still "need" to hear the word remission. I have failed in being able to tell myself I am cured as I just need to hear a pro tell me what I already feel is the case.....closure maybe?

26th. Wow it's been a month since I updated this section which seems strange as I never really intended to have this go on forever. I guess as time passes and less and less problems occur then this page will be almost untouched....well that's the plan! Like always this section is open to all emotions good and bad and I know people don't always like the negative things being said (it seems to make people feel they have to do something or give something to me to stop me seemingly falling down a hole that never ends) For me it's just a part of my being "fixed" and dealing with emotion rather than ignoring it. My work is still the biggest problem for me as two things have happened. One is that I now no longer have the feeling that without work I would not be "anybody"  or that I will be bored outside of work and the other is that due to certain factors I have taken a more stand off ish approach to some of my colleagues. Again this is all part of the process I am forcing myself through as I find a way to deal with issues that people try to put on me. These issues can sometimes take so much of my thought process up in the course of the day that I get annoyed at the effects. If it was to be brought in to daylight I think it a strong possibility that I may have to consider a change of employment, which after 20 years of doing my thing is a hard thing to consider. I also admit that due to my approach to peoples failings at work it is as much my doing that I find myself in this position but I just can't get past certain things of such a serious nature and act like all is well in the garden. That is just not me...in the past I have reacted vocally to solve issues but I do find that this open approach leaves you open to the more deceptive people. I have employed a more considered approach and it seems that this approach in it's self causes unease.

I still have a dry mouth but it is improving, my hair has almost regrown in the extra bald patch that the radiotherapy caused, pain in the tongue and cheek areas are still present but are getting better ever so slowly. I have also manged to lose a stone of weight but am finding I am now sticking on 15 1/2 stone. Mandy and I will begin our usual walking regime in the next week which will help this problem I hope.

I find myself worrying more and more about the chance of relapse and the constant wondering what caused this cancer and if the trigger is still present in my life? I almost froze when Mandy passed comment that it will be twelve months in Oct since I first felt my lump in the neck....it's a strange feeling for some reason. It's got to be good as the more time passes the less chance of relapse occurring.

I still keep putting off speaking to my maker as I guess I have a spiritual side and one which I reluctantly delved into during my illness. Religion is a complicated issue for me and one that I do not expect anybody else to understand...so I will not try!

Anyway just in case you were not sure.... I am still here and breathing!!!

July 2010

26th. The hair on my head has now got growth....at last! It's only very fine and fair but it's a start. My mouth issues arising from the radiotherapy are still present with pain at the base of the tongue continuing. My cheeks have no elasticity and when I blow my cheeks up one side feels very tight and it is quite painful....well don't do it I hear you say!
I am still learning ways in which to accept peoples way in dealing with me whether that be friends, family or work colleagues. It's funny how people react....and I have not really been able to pre-empt many peoples reaction correctly. The analogy of choosing people to be in your "lifeboat" has brought several things close to my heart and on this score I have to admit that a lot of people have been cast a drift as dead wood. It's what life is about and when life is at risk I know who I need and want around me, no names as I do not wish to offend but it has shone a light into the darker areas of ones mind and to a certain end that light has been shone on many of the people around me. Some of those people have stood up and have been counted others have opted for the safety of darkness. If honesty is a light I have to say I have felt let down by several people but I am ultimately happy of those who have chosen to stand up and for which I salute you. These people I can learn something from and to a lesser extent those that have struggled I have also learned things. The people that have chosen to help carry my load in various ways will indeed have their reward as you truly are people I am in awe of.
Being told you have a 60% (later 90%) chance of life with the treatments sends you places that you are not particularly ready to go to and it has been incredibly difficult to watch those I love having to contemplate this thought too. I have no divine right to life but I feel extremely short changed, not just for me but for my wife. For somebody whom has not had to contemplate this kind of scenario (and one which I hope few never have to) will find these kind of remarks a tad negative and possibly a downright unfair scrutiny of others ability but for those that have encountered this world will no doubt know where I am coming from. It's not about judging peoples ability or indeed inability to react as we would hope. It's about separation of those that truly are lost, those that are a rock and those that are just downright rocking the boat! It's something we are all aware of in times of need, it's what we as individuals do with those people in each category that decides not just what kind of person we are, but to what extent we are able to accept each persons "category" in our lives.
They say "variety is the spice of life"....well when contemplating the possibility of life being cut short variety plays no part rather I say "resoluteness is the vigour of sustainability"
People talk about epiphany in life changing moments but I either do not understand the term or it was created by some commercial enterprise that seek to sell you epiphany gifts!
12th. The area that was treated with radiotherapy after chemo is slowly recovering and the pictures below show that my bald head has recovered it's hair from the chemo but the radiotherapy treated area is still bald. The beard that was affected is slowly starting to get some hair growth but it's more bum fluff than anything. The strange haircut I now have is attracting much attention where I work with most being of unkind remarks, but I just laugh and tell them it was something that went wrong! The other funny thing is that my docs did mention it may come back curly and sure enough I am now the owner of lambswool and Mandy has renamed me lamb chop!

11th. Strange today as I have pain in the backs of both my hands that is sore to touch, I can only imagine that this is something to do with one of the chemo drugs that is known to damage nerves. I am also taking a drink to help restore health to my gut as a few things still occur including severe stomach pain resulting in diahorrea and severe heartburn. Thank you to the people that have read my notes and have offered advice on helping allieviate some of the side effects.

5th. HHmmm......Mandy and I arrived well in advance for our appointment at Christies and we soon noted the "we are very busy today" undertones that often come when things are not running to plan. Sure enough after waiting for over an hour we eventually went into a room whereby we were told that Dr Smith the Oncologist was not present but one of the team would see us. This seemed unfair considering the original appointment was postponed due to Dr Smith not being available. It was my final appointment to speak to a specialist about my concerns and now I have lost that important chance as the person that filled in could not give any answers to my questions. I mentioned mouth sores that are getting worse yet there was no interest in even looking in my mouth to check anything. Other questions were met in a similar vane and the most obvious thing was that this doctor did not know a lot about the matter at hand. This may seem unfair and unreasoned, possibly a reaction to the circumstance but I gave it much thought before I settled on this way of thinking. I was told that I would now be referred back to my original Haemotologist Dr Osborne. She seemed surprised that I had not seen my doctor since my last chemo treatment back on the 16th March. When your doctor shows surprise at things like this how should it make you feel?

June 2010

30th. Another month over and I am still here! I have a set of questions ready for tomorrows trip to Christies where I hope some answers will be found to a few of my concerns. In truth I do not know what to expect tomorrow as I have had no scans as yet to tell me my treatments have worked so I doubt whether I will hear the phrase remission just yet. My main concerns centre around my mouth and the increase in pain around the tongue, gums and inner cheek. I can not get rid of the ulcers which keep popping up everyday on my tongue and gum line so I hope some advice concerning this can be sought. I feel nervous about the visit yet I know this is not warrantied but the mind is a funny thing.....

25th. A quick mention to note the very small regrowth of hair on my face. It's very "bum-fluff" like but at least it's a start and one which I will be grateful for as the laughs and comments I get regarding the bald patches in my hair and beard is now becoming tiresome. I would rub lion dung in at this point if it would speed up the hair growth!

17th. Work goes on and I look forward to my next visit to Christies to have a chat with my Doc. The radiotherapy effects are still lingering in some small part that is if you ignore the half beard and the half bald head! The mouth is still sore and not as flexible as pre-treatment. My skin is also flaky where the radio was directed at my skin. Happily my teeth seem pretty much intact...pheeww! I have to add that tonight, for the first time I had a drink of larger and this did not create any mouth pain....aaahhhhhhh....I might have another in it's honour.

A strange thing that I just can't believe is the thought that I am so grateful for modern medicine, as whilst Mandy and I look forward to celebrating our 11th Wedding Anniversary on the 19th of June I find it strange that without treatment I could have been looking at my last months, weeks or even days! It feels remarkable that I have, and still am, going through this as I feel a little detached from the journey. I felt it was very real throughout my treatment but now....it's like it was something that is happening to somebody that I know but have not seen for a while.

I was thrown a little today as my GP surgery rang to have a chat...a chat? It was to update their records and to ask in general how things were going. When I answered questions and elaborated a little I could sense the "OH God this is boring I wish I had not asked but what else can you do" that often confronts me when people I meet ask the obligatory "how are you". I have slowly learned to say "fine thanks" it cuts all the mess for those concerned and to be honest as long as those that matter have time to listen I remain happy!

Other sad news, just like good news, carries on all around you and whilst I have remained hopeful for another member of our extended family it seems that "bastard" will claim a life. It's a scourge of modern society and when figures like 1in3 will be touched by this disease is one statistic that is just to severe to contemplate. You wonder why I am down for survival whilst others are not as fortunate! I often feel I like to give off the modern way of thinking about cancer and that is, that it is not the end like it once was but sometimes it just makes me angry that people and families have to endure the effects of cancer even though treatments make it much less of an issue.

12th. Three weeks have passed since my return to work. I am doing about 30 hours at the moment and it's enough as I feel aches in the bones at the end of the day. I don't start work until 09:00, rather than 07:30, and I am glad of this as at the moment I need a lot of sleep over night with 10 hours per night often needed. I say needed as I go to sleep and then my alarm wakes me...I have no say! Work in it's mental guise is very challenging as the lack of understanding from some people around me is causing me unnecessary stress. Stress is something that I vowed I would not let into my life during this journey and I have put a lot of effort into achieving that goal. I have also learned that you cannot make somebody behave in a suitable manner but I can control my response and the amount of thought I give to others behavior. It's a learning curve that I will make sure I carry on with as being able to discern what I can change and what I can not change is a valuable tool in warding off stress or worry. I personally have found one of my best friends in this journey is a calm mind and to have that calm mind has been something I am very proud of. I am not saying this calm mind I have had is anything other than genes but whatever the reason I am so glad I have it.

May 2010
25th. My first day back at work for almost 4 months. I felt like a stranger at first but things are a little quiet in general so at least it was a gentle introduction. My legs felt quite tired and my mouth became very dry and sore as the morning went on but I tried to shake this off by a 3-4 mile strole in the evening. This morning I woke at 7:30 and I do feel quite tired. We shall see how well I go on as I have a stock take this weekend to fulfill so my first week is effectively a 7 day week....bad timing or what! Non the less I have to become more and more mobile as the effort to shift the extra weight is something I have to concentrate on.

14th.  The mouth is causing some pain still but as of the last two days it feels more like it is on the mend as I require less and less pain relief to keep it in check. My mouth is still very dry most of the time and this creates a bad snoring problem through the night! My arm pain is now non existent which I am truly glad about. My hair in various places (nasal& Ear) is making a great comeback and a definite increase in thickness is of my head hair. The beard is growing (except for where radio was given) but the colour is "dirty" looking so I keep it very short. My skin is dry most of the time and any small amount of sun gives a very warm afterglow to the area that was treated with radio. I discussed a gradual return to work and as far as no problems arise I will return on Mon 24th May. One caveat to this is that whilst overall fatigue and tiredness have not really been an issue I am aware that the last 3-4 days a strong tiredness has hit me around three in the afternoon....and I really do feel tired. I go to bed fully clothed and it feels a very comfortable, restful state and one which I go straight to sleep with. I hope this is not the start of any fatigue, as I really need to get on with work....I feel the pressure to return even though my Doc mentioned a return in Oct!

9th.  Well as I begin the road to full recovery my mouth is still the biggest problem with the throat, mouth linings and tongue still quite tender but I must be making progress as I am not having to take as much pain relief. A funny finding is the before and after look I have gained due to the loss of hair where the radiotherapy has been aimed. I have half of a sort of like beard! My beard colour has darkened and if I am not mistaken my hair is changing colour also with darker "shoots" starting to appear but it's not what you call growth. The strange thing is that I lost my underarm hair for the first time 2 weeks ago.....several weeks after finishing chemo why? It seems the chemo is still active within my body and that is the reason why , although increasing my physical abilities, I tire quickly and ache quite a lot.

6th.  A short entry as whilst a lot is to be said I just don't have the capacity to do it. Least to say this is the start of where I left work 3 months 5 days ago (94 days) and I am due to return to work on the 23rd May....I am ready...I think! My last radiotherapy has been given and the safety you have whilst having treatment has now ended and a strange feeling of relief with much trepidation now exists.

April 2010

27th.  A scheduled trip to have my 9th radio also had me seeing the doctor who was checking to see how my symptoms were doing. I was glad of this visit as I mentioned my ongoing problem with acid reflux and my very sore mouth. He gave me a prescription for both problems and we had a good chat about my prognosis, overall health regarding future problems with my immune system and of course the big question......can I go to India in the not to distant future??? To be honest it was all good news on several fronts including giving a 90% chance of "cure", info that due to only having three cycles of chemo meant that "if" I were to relapse more chemo could be given with a better outcome and I was told that if all goes to plan I could be in India for Xmas 2010...I suddenly felt a lot better! I have to check on my inoculations as having chemo can neutralize your injections against things like hep A & B which I have had. Other "live" inoculations are not to be had for 6 months so I will have to discuss all this with my travel clinic. I truly would love to be in India pronto and although Christmas is an expensive time regarding flights I hope both Mandy and myself will be there ticking of Kingfishers!

20th. Appointments for my radio are not going as planned as both the times I was given on each day and the delay on arrival are both a real pain. I asked for mid day ish appointments which I was told would be no problem and they confirmed this. Out of the four appointments only one has been at this time the others have been at the end of the day. Not to bad but then every appointment I have had so far attended has been running about an hour behind leaving me with rush hour traffic of Manchester and Rochdale! The swelling around the original lump site after two radio treatments has us fearing the worst and when yesterday I asked the nurses about this just to make sure all was OK it was a rather rehearsed and quick response without any checking, reassurance or interest. My feeling is that all the literature they give you and all the pep talks originally at the beginning of any treatment is not backed up in reality. Everything you read and are told goes along the lines that it is important to mention any side affects, but when I have it's all very too busy to remember to resolve any issues. I can't decide if it's down to me not being forceful enough.


15th, A change to the planned timings as yesterday I received a phone call from Christies telling me that they had forgotten to take some measurements so my radiation would not be given until today. I was given a time to go yesterday to have the mask fitted with more measurements taken as well as more photos taken. I get a little annoyed when something like this happens as I do like to have quite a rigid plan and sometimes I do feel that Christies lacks a personal touch due to the volumes of people it sees. Non the less I have to accept that the greater good is being performed. My nerves are jangling again as I enter the next phase of my treatment. 
 
13th.  I will be visiting Christies again tomorrow for the start of my radiotherapy. I am sure the early stages of this will be uneventful but it seems the cumulative effect as the treatment goes on will have impact. My skin is probably my biggest fear. The Doc mentioned damage to saliva glands making for a dry mouth, the chance of stroke is now 50% greater due to where the treatment is administered, secondary cancer in 20-25 years on is a risk and tooth decay with movement. The radiotherapy has been something that in my mind as I don't think I have had the reassurance and information that I needed to feel totally at ease with the treatment vs side/after effects. Non the less it's a gamble as all of the chemo, radio, CT scans and PET scans are as all have the ability to cause secondary cancers later in life.
The thing I have to remember is that whether I like it or not is the fact that if it was not for the treatment I would now most likely to be seriously ill possibly not even here due to the aggressive nature of the disease. When you read about how aggressive it is hard to imagine that if left untreated I would possibly have had 8-12 months which means that I would now have had 3-4 months left so to have the risk of "possibles" later in life you have to take that and be very very greatful of the extra time.
A lot of people mention that I have never really mentioned my status as regards cure or how the treatment is effecting or working against the cancer. To be totally truthful, whilst you do face your mortality during this process I have never ever ever contemplated not being cured...I just can't. This is why I have not mentioned my survival or prognosis in any great detail, not because I have been hiding anything but just because I have never really felt that the treatment is not going to work so failure has not really been in the forefront of my mind. Is this denial or positivity? I don't know but I do know that I cannot look into relapse treatments as my chances of cure lessen from the fist line treatment of 90% to a second line treatment (relapse) of 50%.

11th.  Having visited Christies again on the 6th to have a CT scan with my final fitting of the mask. Measurements were taken to determine the treatment plan I will undergo and where the best place is to have the radiowaves enter the body and to decide which area to target. Once these details have been worked out I will start my radiotherapy on the 14th. I am not looking forward to the daily drive to Christies as it is a 60 mile round trip. One good thing is that you get your own car parking place that is reserved for radiotherapy patients which makes the hassle of parking that bit easier. I am hoping that the radiotherapy will be kind to me although I am almost sure that due to my fair skin I will most probably suffer skin trouble in the affected area although I am hoping that side effects wont be any worse than chemo.

March 2010

31st.  Visited Christies on the 30th with Mandy. The visit was to have my mask made that will keep my upper body in place when the radiation to my neck is given. This firm hold that the mask gives will allow the radiation to be given in the exact same spot, and correct location, every time over the 15 sessions I am to undergo. The mask is made of a thin sheet of rubbery plastic that is dipped into hot water and then placed over your face, neck and shoulders. Several people then mould this to your contours keeping it as tight to your skin as possible. The first mask was not well done and I was able to move within the mask so another had to be made. I have to say I started to lose a little faith in some of the staff as conversations of Hannah Montana? donoghts, silly jokes and lot's of singing to the radio were far to much in evidence considering things were not going to well. As time ticked by the feeling that they wanted to go home was all to apparent as the time was being asked regularly with much huffing and puffing. Some of the staff were very professional but clearly they were fighting a losing battle with others. It was mooted that somebody from planning should take a look at the mask to make sure it was acceptable but this just vanished into the ether as the time was ticking round to playschool ending. My time at Christies has so far proven not to be the experience I was expecting. I am suspicious that the phrase "do you know who we are" is possibly creeping in.
I was particularly aware that due to my weight at 16 1/2 stone (2 stone heavier than when I started) and the fact that I am very broad across the shoulders they found it very difficult to get my shoulders into position as they had to keep moving them when the mask was either removed or refitted which lead to the mask then not sitting correctly. Questions along the lines of "have you had much to drink during your chemo?" My answer was "no". The reply was then "what you have managed to stay off the drink whilst on your treatment?" I replied "yes, I do not drink much anyway and explained that the weight was down to food alone" Oversensitive maybe? But this line of presumption led me to think she was a relative of Sherlock Holmes.
I will on my return, and hopefully when less youngsters are around check to make sure that this mask is OK as it is clearly a very important piece of equipment in making sure the radiation is administered correctly.

22nd. Barring any unforseen occurrences I have had my last chemo infusion on the 16th March. I have been to see a Doctor at Christies to discuss my Radiotherapy regime and have an appointment made on the 30th to have a mould made to keep my head in place whilst the treatment is given. It also is very important as the mould acts as a very accurate guide as to where the treatment is administered. My doctor at Christies is a doctor Smith. I have to say that I am reserving judgment on this fellow as I felt he was the first professional I have dealt with that did not respect my questions with a sense of patient needs. rather he was fulfilling a set of requirements. I hope to be proved wrong but when I asked a particular question about my pheno type the answer "NO" in trying to find out the answer was not helpful.  I have found it odd that asking questions seems either frivolous or unnecessary. Asking questions about radiation and the risk of secondary cancers due to my age were not met with a sense of understanding or due care. I have to say this is not what I have come to expect and hope this will not continue.

February 2010

16th. A routine trip to the hospital to see Doc Osborne for a general discussion and blood tests. The only bad news was that I am now classed as neutropaenic which means I am at risk of infection which can be serious and in some cases life threatening.  What you would class as normal bugs are now a serious threat and I am hoping all the hygiene and other routines to minimise infection help through this problem. The doctor has prescribed a course of anti-biotics to help with any possible infections over the next week whilst my white blood cells increase. I was informed that whilst doing all I can to stop infections ie, careful food types, cleanliness and hygiene etc the likely hood of an infection coming from my own body, mostly the gut or oral parts being the greatest threat as we all have bacteria in great quantities in these areas.

The chart below shows the level of danger regarding the amount of neutrophills in the blood.

My own count was 0.6

If you want to read about Neutropaenia then click HERE

10th.  A trip back to the hospital (on the 9th) for bloods and a PET scan result. Mandy came with me and after a brief wait Bev the nurse came to take my blood. I was hoping I would be happier with needles by now but it is just the same...I hate them. It was a fast affair and before long a cup of coffee was being enjoyed in the day lounge. We arrived at our appointment at 10:45 and at about 12:30 Dr Osborne called us into his office. I was awaiting a kick in the teeth after all the good news but to our surprise the PET scan turned into a pussycat and was soft on us. Fantastic as the Doc said that the ENT surgeon that took the swollen (30mm) lymph node did a good job as very little activity was present from the cancer cells and no other areas showed up! I am classed as a localised case and my treatment so far will consist of 3 rounds of R-CHOP 21 chemotherapy and 3 weeks (mon-fri) of radiotherapy at Christies.

I mentioned to the Doc that I feel like a fraud as so far the chemo has been tolerated quite well with limited side effects. He replied early days but my age and general well being will help with this, which I am very grateful for. No drop offs in mood after the steroids have been forth coming of which Mandy is very pleased!

For the first time since my 1st chemo after coming out of the hospital my stomach rumbled.....that's more like it!

6th.  No real news of late only that we are dreading the crash in mood which many people have as I use the last of the Steroids that I take orally for 5 days. The last day is Sunday so we shall see by Mon-Tues if I am still married! I am already getting bored with the staying in more side of things but I hope to get out a bit more next week as this is supposed to be the middle and worst section of the 3 week cycle. It already seems that chemo affects people differently and in so many ways that whilst I am aware of some of the side effects I am not over concerned that all of them will hit me...yet! I think it a more realistic view of things rather a blind or surrendered walk into the unknown as I just need to know what to expect rather than it just hitting me and leaving me wondering what's going on yet live in hope that I can somehow miss most of any bad side effects...including two of my worst fears, mouth sores and infections!

4th. I forgot to mention that whilst I am still waiting for results from the PET scan I did receive the results from my bone marrow and trephine procedure...all clear. This is another bit of good news as I hope to have less and less cancer involvement.

I am having back pain as of yesterday that was mostly gone after a good nights rest last night. Today the ache in the lower back returned and is quite uncomfortable. Also a pain in the knees and a dry mouth is very much in evidence.

3rd.  I am still in hospital this morning with what was quite and uneventful overnight stay. I had a light headache that was increasing so I decided to get myself to bed at about 22:30. I seemed to fall asleep easily as I did feel quite tired. The heat in hospital (24.5C) which is very high for me probably had something to do with my headache and tiredness more than any of the copious amount of drugs being pumped in, I am saving that reaction for when I get home! The staff have been great once again with just the right amount of observation, questions that I required and indeed felt comfortable with. My Chemo nurse is Gabriel and she, just like Bernie (another chemo nurse) are very helpful on all of the questions and concerns we have had and boy do you have a lot of both. Mandy is due to pick me up around 11:00 today so I will be at home and enjoying the peaceful surroundings of my wife, cat and wildlife in the garden.

I forgot to mention (as it is important) that Doc Osb did not have the results of the PET scan which is a little frustrating as we were hoping this would allow the full treatment regime to be known. Non the less my attentions are now focusing on the waiting for chemo side affects and hoping I have few issues with picking up any infections as this could be very bad news, due to my having no resistance of immunity as the blood counts begin to fall in each cycle of treatments, each cycle being 21 days.

2nd.  I am writing this from the ward at Fairfield hospital. I have just (30mins ago) finished my first installment of chemo and so far I did not have any reactions to any of the drugs. The R in R-CHOP is called rituximab and it is common to have a reaction to this drug so it is administered slowly...very slowly. After 4 or 5 other injections via syringe the ruxi is given by a drip and it has taken about 4 1/2 hours to finish. It's just bloody boring. I have to stay in tonight for observation so I should be back watching the garden tomorrow. Anyway how is the new hairstyle making you feel....queasy maybe.....join the club!

                                  Pre Hair Cut                                       Post Hair Cut                         NHS Finest Line In Hairpiece

   


1st.  Nerves cannot jangle any more than they are as I write this. I will learn the details of the stage my cancer is at at the same time my treatment regime will be given to us.....with the 1st of my Chemo also being given. Lot's of questions to be asked and work related issues continue to cause much consternation to say the least. My work issues have failed to be resolved in a manner of which I would have wanted so I have  promised to put them to one side for now as I concentrate on the things that are now more pressing and to be honest more important. I am down for a short stay in hospital for the first round for observation purposes of which I hope there will be nothing of interest to observe. Anybody that knows me knows my life is not complete without gadgets so I have checked with hospital staff and I will be going in with laptop, wireless internet dongle, ipod and DAB radio which will be tuned into Radio 7.

I am looking forward to seeing Bernie my Chemo nurse as I think we are down to be good buddies.....as long as she is gentle with me!

January 2010

31st.  Well the time is getting closer and the emotions are getting more intense for both of us. Today we had plenty of phone calls from friends and family and even a much needed visit from a couple of good friends....you know who you are! Feeling in control of this thing is not something you feel you are so in readiness for the hair loss that I am told will happen with this kind of Chemo Mandy orchestrated a hair cut that left the cold wafting around my ears. But don't worry I had already made provision for a wig to be found.....I know but I have always been concerned about my appearance..... Anyway the NHS is a wonderful thing so I made use of the facilities available. Most people are surprised to learn that I would use a wig but to be honest I think it rather suits me. Some have laughed (yes you!) others have just told the truth.

29th. My Dad took me to Chrities hospital today which felt really odd due to the fact that visiting a hospital with Christies repute is quite strange due to the reasons for the visit. We were there early but before long I was sat in a darkened room in a recliner. They inject you with a radioactive glucose liquid that will eventually show up any active cancer cells. I was told not to speak to anybody after I was injected as the vocal chords can take up the liquid and give a false positive showing. An hour passed in the room before I was lead to the room where the PET/CT scanner was. It is a large machine with a steel bed running through the middle of it. You are positioned correctly strapped in over your chest which holds your arms still and then a strap is placed around your forehead to stop any movement in your head. The machine whirrs into action and you are photographed in sections as the machine makes it's way down your body. It soon became apparent that what was a comfortable position at the outset soon became an uncomfortable position after 10 mins. The scan took about 20mins in total and by then both my hands had gone numb and my head also took on a pain that resulted in numbness (no jokes please). I was glad the scan had finished and realised the room was very cold and that anybody with claustrophobic problems would not like this scan. I am blind as a bat without glasses so when you have to remove them I can hardly see an arms length in front of me....good for summat at least!

After the scan I had to wait in "the conservatory" chill out zone for 10mins where they would check to see if the X-rays were of satisfactory quality. I was offered something to eat and drink and and sat down to watch Tony Blair try to explain his reasons for the war in Iraq. Myself and a much older lady both agreed that the beads of sweat we were watching for rolling down his face were not going to come so after 25mins nobody let me know so I somehow found where my Dad was waiting and was soon back at home knowing that I will most likely become quite familiar with this hospital in the future. Another, and possible final test was over in my staging process so I hope to hear on Tuesday of any findings.........please please please let it be a stage 1 and only local!

28th. Our second meeting with Dr Osborne was as expected with more blood taken and my height and weight was noted. We are still awaiting the results from the sliver of bone that was taken from my hip (I don't advise having this done) that test if the disease is in my marrow. The very important PET scan with FDG is tomorrow at Christies and this is a very nervous time as all the positive news that has been coming could be blown away by the PET scan results. If the PET scan does not show anything that the CT scanner has not already seen then in all probability I will be undergoing 3 sessions of CHOP-R followed by 3 weeks of Radiotherapy.

Originally I was to have the treatment at North Manchester which would involve quite a bit of travel. I have to say that I felt at home in the J5 ward there but today the Doc said I could have the treatment at Fairfield General in the Progressive Investigation Unit (PIU) which is a lot easier to access for us. The down side is that our Angel Of the North, Sister Sally Lees will be absent most of the way through my treatment as she is only at Fairfield on Thursdays. I don't know if it is usual for other luvvies but we seem to pick out certain people in this journey and use them as an aid along the way, Sister Lees was one of these very able, calm, strong and mildly amusing characters, and one I am reluctant to give up contact with. The Doc today mentioned that I could swap my Chemo days to Thursday so that we would get to see Sister Sally which was reassuring. I have already got a backup plan as today we met one of the Chemo administering nurses called Bernie.....I liked her too as she looked hard as nails so I have taken the challenge of seeing her soft side! Round one I won by default as I mentioned my nervous nature regarding needles and for the first time I was offered a hand numbing cream to apply to my hands before I go for my first round of Chemo...aaahhh she did not see that proverbial left hook coming....I think we will get along just fine.

The bugger of Radiotherapy is that it is given at Christies Mon-Fri for three weeks.....which is a lot of travel through a lot of traffic...I don't fancy that to be honest! The thing along this ride is that just when you think the ground beneath is solid I lose my footing with the simplest of things such as having a choice of Hospitals! but this has got to be a good thing.

Back to the paperwork filling in exercises of which there are many!

26th. Received my appointment for Christies today for what I think will be the final piece in my jigsaw which will tell me of the stage my cancer is at which in turn will give a clearer picture of the prognosis. 

25th.  Today's trip to the Andrology clinic went well with this being the least stressful hospital visit so far although the reasons for our visit are still very painful. We discussed preservation by means of nitrogen freezing and the ability to use this sample for upto 55 years! This being a recent change in amount of storage years. IVF is only available for women up to 40 years of age but the thought of having the choice that we cannot have children taken away was something we could not let go of even though the chemo does not always render men infertile. Anyway job done and soon we were back home and back to filling in more forms in readiness for the treatment and time off work.

Still waiting for my appointment at Christies and although I have had everything run as planned you can't help but worry an appointment is not going to come through. The worry with this is that your treatment will be delayed and I don't know whether this is a personal thing or everybody facing this is the same but I like to have a structure to stick to and am easily thrown if this alters....although this roller coaster is having me change and accept that this is something I have to deal with better.

I forgot to mention that I started taking some tablets (on 23rd) called allopurinol, which apparently helps protects my kidneys for what lies ahead. It seems it stops the over creation of uric acid and helps the kidneys process all the dead cells that will pass through them when chemo is administered. I just hope more rogue cells are passed than good!

24th. Well Well Well. Having prepared ourselves for Burkitts Lymphoma which would be hard to deal with due to the intense nature of this kind of chemo treatment and the long stay in hospital we have found a great deal of comfort in finding that I actually have a common strain called Diffuse Large B Cell which has a different kind of chemo treatment that I will mainly be having as an outpatient. The treatment has yet to be finalized as I have a few more tests to come. We are now waiting on Christies hospital to call to arrange an appointment to undergo a PET scan that shows cancer cell activity in the body. I have been given a start date of the 1st Feb for my first chemo session which is quite a sober thought. My big wish at this moment in time, and this is something a lot of cancer (I don't like the term victim or patient) luvvies want is an early stage of the disease as the prognosis (although prognosis is very variable) is far better with a stage 1 or 2.

At the appointment on the 22nd we finally got the conversations we thought would help us in so much as having somebody to ask all our questions to. Myself and Mandy are so far immensely lucky to have a Sister Sally Lees who has been very patient with our point blank questioning technique we seem to use at the moment. This lady, I feel is going to be our Angel of the North on this journey and the best thing at the moment is that she has a quirky sense of humour, which suits us! Ward J5 is going to become my living room over the coming months and it was quite a "real" and strangely warming experience as it dawned on us that the other people around us were patients as well.....they had hair and they looked well, albeit some were a little puffed up most likely due to steroids. Mandy found this experience a little bit more bearable to, as it was she that noted that others around us were not the incorrectly thin, grey and ghostly figures that you imagine a cancer luvvy to be. It was the start of a day that had Mandy gain a lot of strength from in that knowing that I will not be losing a load of weight and could well remain normal looking (hair loss discounted) and when the news that it was not Burkitts came on the same day it really was a turning point for Mandy. Any cancer luvvy knows that the effect on your immediate family can be as hard for them and watching Mandy struggle early on was not something I like very much. I knew Mandy had a strength it was just finding the right key or event for the strength to be allowed to envelop rather that the fear and worry overcome.

I have managed to take in quite a lot of info lately as when I first was told of the cancer I struggled to even look at any info on the page or on screen. I have built this inability to look at info up, to a point whereby my mind does not shut down for quite some time. Everybody is different and Mandy has found more comfort into looking into and preparing for lessening the impact of the chemo by taking note of advice on food, health, and precautions over certain issues that could become very serious over the treatment period (ie infections)

21st. A phone call today from Sally a hematologist had us upset as the start time of treatment is close. I have an appointment to see my blood doctor tomorrow (22nd) whereby it looks like we will get my results to confirm the strain of Lymphoma and I am sure we will be walked through the treatment details and the process we will be undergoing. The other thing I was told was that next Wednesday (27th) I will be admitted for a one night stay over in North Manchester Hospital where what is called a "Hickman line" will be inserted into my chest. It seems the intense treatment for this kind of Lymphoma will make the process of blood samples and chemo etc much easier to withstand as the amount of needles would be hard to take. Once the line is in place I will hopefully see it as a positive feature to have during the treatment. I asked if they would put me out for the line to be put in but the answer was no!!!! If you are not familiar (and why should you be?) then google hickman line if you would like to know what it is.

19th. I have two confirmed appointments for the near future. The first is on the 25th at the Andrology clinic at St Mary's in Manchester for purposes of preserving the the next generation of the Rush family. The second is with my hematologist Mr Osborne on the 28th at fairfield general hospital.

14th. Just back from North Manchester hospital whereby a full body CT Scan was performed. The new machines have this done in no time but again I had to have a needle in the arm where dye is pumped into the veins to help show up and more growths or organ problems. I also had to drink a litre of water with a gastrografin ingredient. It looks like my treatment will not begin as quickly as we thought as the results to find the exact strain of the Lymphoma have not yet been fully obtained. I have to arrange an appointment to have my Sperm to be frozen as at only 35 years old the option of children being taken away is one we are not ready to have taken away from us. The chemo administered could render me infertile so a date with a small bottle and a locked room is in prospect!

12th. Mr Osbourne is now my best pal but he did blot his copy book quite badly when he sprang a surprise of the much dreaded  bone marrow aspiration and a bone marrow trephine biopsy. After agreeing to have this done but only under light sedation the process began. The bone extraction itself was the worst as a slither of bone of about 25mm is taken from the hip bone. Wholly Cow!! I thought as a large needle plunged in. I am mard with things like this but it was Mandy that fainted. This seemed to make the procedure more bearable! I have been told that I will have another one of these done with at least 6 lumber punctures -----I am the bloke that breaks into a sweat at the sign of a needle. A mountain of blood was also taken to be tested.
So far my Non Hogkin's Lyphoma is now being looked at as a very rare form called Burkitts. This is a very aggressive form that requires very fast and intensive Chemotherapy sessions. I have been told that at least 3 months of my life will be inside a hospital and 12 months of my life will be taken up talking about cancer and rehabilitation. That's a real bummer I can tell you as Mandy and myself have never spent a night apart since we got married in 1999.

11th.  An appointment for a Hematologist was given me today (11th). Very prompt service having only seen Mr Gordon the consultant on Friday the 8th who arranged the appointment. I am glad it is at Fairfield hospital as North Manchester was mentioned. I can go to work in the morning at least.