My Journey

I am dreadfully sad and sorry to have to announce to you all that David has sadly and suddenly, today, 28th August 2008, lost his battle with cancer. 

David was the most kind, generous and loving man I have ever met and inspired me to do many things that otherwise might never have been possible.  I cannot even begin to explain to any of you out there how special David was and how profoundly grateful that I am to have shared 11 years of my life with him. 

David, left behind many people who will be hurting immensely, but amongst those who will be suffering in particular today are his Brother, Martin, his Sister, Sheila, his Daughter, Natalie, his Son, Darren and his various nephews and nieces.  This list is totally unexhaustive as I am sure there are many other people too numerous and no less important to mention.  At the point of writing this email, David's mother is yet to be told, being also in hospital.  I hope she will have strength to absorb this news and the power of Will to understand this devastating loss.

David, may you rest comfortably and peacefully and never feel pain again.  I love you totally and dearly - you were my entire life.  I have no idea who I am without you, only that I am now a lesser person.  Your ever loving wife, Sarah xxxxxx

David Pell
04/09/50 to 28/08/08

We've not written anything for a while. Life has been hectic and not altogether pleasant.

David was admitted to the Macmillan Unit on Monday 4th August. It wasn't a planned event, more that David's symptoms became more and more unmanageable. Prior to his admittance David had been almost self sufficient in that he could make himself something to eat, he could walk around a little and he could wash/dress relatively easily. He was finding it more difficult to concentrate for any length of time and his ability to think deeply on any level was hindered. Finding out that David had to be admitted was distressing for me, but it was something I accepted as all I wanted was for him to get the help he needed and to get his symptoms under control.

David's bed was in a 3 bed bay, although the place wasn't modern, it was clean and tidy and the Nurses were kind and professional. Whilst you often hear in the newspapers of dreadful stories of nursing in the NHS whilst David was in hospital we only saw goodness, patience, kindness and capability.

David was most distressed at being admitted to the unit. He was frightened and concerned that he wouldn't ever come home. He really felt that now he was being admitted he would be there until his ultimate demise. It took a great deal of time and patience explaining to him that he would come home, that he would see his family again and that it wasn't his time yet. All David wanted was for me to be with him all day. It was soul wrenching having to leave for any length of time. Indeed I would normally get to the hospital around noon, then leave for only an hour or two to get something to eat myself around dinner time and then return again to stay with him until 10pm at night.

Sadly on David's second night in hospital the gentleman in the bed opposite him passed away and you can perhaps imagine how upsetting this was to David. It was like a grim view into the future - it was deeply disturbing and profoundly sad.

What was perhaps even more sad was that no sooner had the bed been vacated then within hours it was full again, with yet another poor soul suffering, in pain, unable to walk, catheterised etc, etc.

A major aim of David's admittance was to get his nausea and vomiting under control. As David had been feeling (and indeed being) sick he had lost more weight due to the fact that he was no longer eating. The more weight he loses the more strength he loses.

Cancer does many nasty things to the body, one of which is destroying the body's ability to process food. It takes away the body's ability to absorb nutrients from food. It takes away the enjoyment of food. I have found this aspect particularly hard to deal with. David has always enjoyed his food enormously and to see him struggling to eat is very painful indeed. Whilst the hospital try and provide food that is both nutritious and varied, unfortunately David didn't like much of what he was given and as such didn't each much. He managed to eat some soups and a small desert of ice cream most days but very rarely did he actually manage to eat a main meal.

As David was neither eating or drinking he became very dehydrated which made him feel very confused. He had also become very anaemic again and he ended up having to have another 3 blood transfusions. These gave him an immediate boost but the effects seemed quite short lived. His blood pressure was very variable. When standing up, his blood pressure plummeted which made him feel very dizzy then it would normalise on sitting or lying back down. Sometimes the blood pressure was high due to the pain he was experiencing, other times it was completely normal. All these things were factors which were being addressed by the doctors and nurses.

Throughout his time in the unit his medications were being tweaked - upping one drug here, reducing one drug there all in an effort to get David's pain under control, to reduce his nausea and vomitting, to reduce the nerve pain, to help him sleep and to help get his anxiety under control. This in itself caused David a lot of upset as he was constantly a little confused as to what was happening. Finally we managed to get the doctors to write down exactly what he was taking and when - as he could see it written down, he could understand a little more what was happening. This enabled him to feel a little more in control.

Finally just over a week and a half later David was able to be discharged from the hospital late on Thursday 14th August. He was happy to be coming home but very anxious about being at home and away from immediate help from the doctors. When he came home he still had a syringe driver in his arm pumping away small doses of a drug for nausea 24 hours a day. Initially the doctors and nurses thought that this might be taken out after a week, but at the time of writing, he still has it in his arm and the District Nurses are still coming in on a daily basis to change the drugs over and check the site of the needle.

We're both delighted that David is home, but it hasn't been without it's trials and tribulations. Before he was able to be released home the nurses had to be happy that he had sufficient adaptations at home to ensure he was comfortable - these included special pressure cushions for him to sit on, a raised loo seat, a special electric air mattress to prevent bed sores and a special bath seat. The air mattress is quite noisy but it has made it so much easier for David to get a comfortable nights sleep which is quite a blessing. Unfortunately he already has a few pressure sores, but we manage with these, keeping them clean and putting special cream on them.

David does now get very breathless and this is extremely frightening for him. The breathlessness comes both whilst he is sitting still and also when he's walking around. As he can barely walk now, he has a wheelchair for when he goes out. Since coming home though, he hasn't really been well enough to go any where, being confined to the house. Quite whether we will ever get out far again will depend I guess on a daily basis as to how he is feeling and how comfortable he is.

For the time being, I just have to be patient and do as much as I can to help David feel well and to help him get around.

The saying goes, "charity begins at home" in this case, it actually begins and ends in Brighton.  Those of you who are eagle eyed will have seen in the comments section that David's nephew, Matt has decided to do a 10k run in aid of Cancer Research.  Cancer Research is an excellent charity which will hopefully one day turn cancer into a small and inconvenient problem rather than the life taker that it currently is. 

If you can, please visit Matt's page and give generously. 

http://www.run10ksponsorme.org/mattpell

Donating in David's favour must be a good cause - go Matt, go!!!!

You have not heard from me for some time; I sorry for this. I will be doing a new blog shortly. The problem has been that the first 3 cycles of Chemo did not have the results they should have had and, bunch this with the fact, that I became so tired I could not sit at the computer without falling asleep. I never got very far. Any way as I am dropping off now I will pick this up hopefully tomorrow.

It's been a harrowing year so far. The events that have unfolded seem almost too unreal, yet, here I am typing about something that I can hardly entertain the thought of.

David was diagnosed and he started his treatment - we tried to be positive, even when things were tough during David's chemo. It wasn't easy. Now, 3 cycles later the chemo is over. It would be easy to think that once the chemo is over, David's quality of life would get better. Sadly as anyone who has been through chemo would be able to tell you, the effects of the treatment are long lasting. Chemo destroys the good cells, and is supposed to destroy the bad and the downright ugly. Chemo isn't the end though. After the chemo came the battery of tests to find out how well David had coped with the chemo - scans, blood tests, etc, etc, etc. David had been feeliung a little better and we both felt more upbeat, believing that we would get some positive news. However, hell is a place called hospital. We received a call from our specialist calling us into the hospital urgently. From experience, urgent calls are never the ones that you really want to receive and they very rarely bring good news.

Sadly the chemo didn't do anything useful for David at all. It ground him down and then spat him out whilst the cancer ran riot. While David had been feeling a little better the cancer was busy spreading, to his spine and even more around his lungs. What a cruel trick life has played. Our urgent trip to the hospital was to discuss an urgent radiotherapy to David's spine. The specialists feared that the cancer would lead to compression of the spine, which could lead to paralysis. Once more, David had to suffer the pain of lying down on hard benches, having yet more tattoos for the radiotherapists and cope with daily trips to the hospital.

The specialist gave a prognosis of "several months NOT several years" - but what does that mean? Even now, having had this knowledge for some weeks, I still cannot type this without tears falling down my face and my hands shaking. Some days, it's almost impossible to talk to anyone because I simply cannot keep my emotions in control, other days, I manage but often have to cut conversations short. People say I have been brave and am a tower of strength to David, but I don't believe that. I'm just ticking over, not really living, not really daring to think much - it's too painful. Unfortunately though I tend to be a deep thinker and consequently I feel in someways that I'm in as much pain as David, except that I know I'm not. David tells me now that he has come to terms with the fact that he is not going to live until he is old and that his life will be cut short. I cannot bear this. I simply cannot. I have to bear it though, it's tearing me apart.

We were advised by our specialist to seek a second opinion - after a long drive we found ourselves in Cambridge for this appointment. I guess we both felt optimistic as we had both chatted happily on the way over there, interspersed with little cat naps from David, it was a nice day and the sun was shining. The specialist was extremely thorough, he asked a lot of questions and carried out a full examination. His opinion though was the same as our local specialist. Comforting in some ways because as least then we knew that we had received the best possible care up to that moment, but disturbing because in our hearts we had been dreaming of a "cure".

Neither specialist were of the opinion that any further chemo would be useful, giving it a less than 5% chance of shrinking the cancer. The Cambridge specialist however thought that as David still felt able to fight on, that a cancer growth inhibitor drug would be the next step for us to take. He predicted that this drug would have a 25% chance of helping, but that the side effects would be very unpleasant.

The specialist also felt that David's breathing could be eased by draining the build up of fluid on David's lungs. Whilst that might seem a simple idea, it would mean a number of days being spent in hospital. He also felt that it might be possible to reduce some of the pain by giving David a form of nerve block which would serve to slow the pathways from the nerve to the brain and hence damp down the pain.

Our local specialist agreed with the growth inhibitor and as I type, we await a call to arrange this new drug. Hopefully to commence next week. David had an x-ray to ascertain exactly how much fluid had built up in his lungs and also to find out how much damage the cancer had done to the bones in his pelvis. Having to walk the length and breadth of the hospital for these x-rays has caused David severe pain. Added to this David had to have a second blood transfusion as he had become anaemic once more.

As I type this, David is thankfully sleeping. I am extremely grateful that he has managed to get some sleep as the pain was so severe last night that he managed only one hour of sleep and that was at 6am this morning. It's very difficult and emotionally draining to see the person you love in so much pain. The pain is such that it makes David rock backwards and forwards. He is absolutely wracked with pain. He cannot get comfortable as the broken ribs and pressure from the cancer in his chest wall means the pain pulses through his body. The sheer effort of trying to lie in one place to prevent himself from being in any more pain makes his legs ache to the point that they too are painful. He can no longer grasp things very well and constantly drops things. This frustrates him as his mobility is restricted. Trying to pick things back up causes yet more pain. All David has to look forward to is pain, pain and more pain. Sleep is a relief. I don't feel that I have much to look forward to at the moment. I hate seeing David in so much pain and it hurts so much to see him cry, and the tears roll down his face as he struggles with the agony he finds himself in.

I type this and feel very selfish, as I talk about how I feel, but at the same time I think of all the other hundreds and thousands of people out there who are suffering more than us. I wonder how they are coping and feel great sorrow for their predicaments and admiration for their bravery. While I dare not feel too hopeful I try and remain positive, and remain committeed to doing what I can to ease David's discomfort.

In the meantime, we await an appointment with a palliative care consultant who we hope will be able to ease David's pain. That I guess will be a post for another day.

I haven't written anything for a while - mainly because I set this blog up for David, it wasn't meant to be a forum for me to take over, but also because my time has been better served by being there and taking care of David's various needs.

It's been an interesting but also somewhat disturbing and upsetting time over the last few months. If you asked me now what life was like before David was diagnosed with cancer, I'm not sure I could tell you. I know that I perhaps didn't really appreciate what you might call mundane moments in life and that I did a lot of things at warp speed and often didn't stop to really think. Whilst cancer will never be a gift, I can thank it I guess in a small way for making me enjoy some of the simpler things in life like the odd days when David is well enough to have a snack out with me at a cafe or simply just visiting a garden centre together.

You might have thought that as I haven't got cancer, or indeed any form of medical condition that life would be relatively easy, but living with someone who has cancer is anything but easy. By saying this, I do not mean that David is a burden, far from it, but life has changed and I now need to think of so many more things than I ever did before. So what do I have to do differently now? Well, there's a number of things, some simple, others not so.

You will know from David's last post that he used to be an extremely fit and strong person - cancer changes this. The nasty thing about cancer treatment (and I'm talking about chemo) is that whilst it is helping you by getting rid of the enemy, it also eats away at your body. David has lost weight since his battle began and sadly his muscles have also atrophied and he is considerably weaker than he once was. This means that sometimes, depending on how David feels on a day by day basis, that he can sometimes not lift anything much heavier than a cup of coffee without feeling exhausted and drained - imagine how frustrated that must leave him feeling. Normally, he copes very well with this, but sometimes his frustrations boil over and he vents.

One change in David that I do sometimes find really difficult to deal with is the fact that the various medications and of course the exhaustion have made David forgetful at times. As I haven't got the best of memories I have, in the past, relied on David's super memory to help me along in my day to day life, yes it's lazy but that's what you do when you're a team, you work together and rely on each other. I sometimes worry that if my head wasn't attached that I'd perhaps forget it and leave it at home. David's memory has always been phenomenal, remembering dates, times, figures etc from a long way back into the past and remembering things that I have to do. This ability has deserted him for the time being, no doubt to return once he has recovered.

I mentioned briefly exhaustion - whilst I will have difficulty explaining precisely how badly this affects David, from my perspective it is perhaps one of the worst things he has to suffer with on a daily basis. I try to encourage David to take naps as often as he likes but the fighting part of David doesn't always like to give in to what he sometimes perceives as weakness. We often sit and chat, but partway through a conversation he nods off, only to wake up 10 minutes later confused and wondering what's happening. He no longer drives his car as a consequence of this. His recent blood transfusion has helped and also the fact that it's almost 3 weeks since his last chemo sesson, but many things which we all take for granted tire David out.

The old BT advert said "It's good to talk". I agree with this, it is good to talk. However, talking is often something that tires David out the most. That was one of the initial reasons for setting this blog up. What we tend to find happens is that David will receive one telephone call and then another 3 or 4 will follow in rapid succession. Often the same things get said in these telephone conversations and we just end up repeating ourselves. It's great that people call us, but just unfortunate that all the calls come at the same time. Just like buses! Joking over. David's voice has improved dramatically since his operation and thankfully he can now hold a conversation. Some days however, it is still an effort for him, particularly if he needs to raise his voice. If he needs to raise his voice, he gets very breathless and sometimes light headed. Some days his voice is good and strong, others not so much.

Chemo destroys mucosal linings - whilst you might think of mucus as just being something that is troublesome when you have a cold or flu, it's something that is essential in our bodies that is protective. We have noticed that there has been damage to mucosal linings especially in David's digestive tract - he can no longer eat or drink some of the things he loves. Spicy food is uncomfortable for him to eat, as is drinking his beloved wine. Indeed even the least spicy of foods are often too hot for him to handle. However, the good thing is that as the chemo cycles come to a close, he can eat/drink more things. Also the whole taste experience seems to be in global technicolour. Things taste and smell more intense. We have had to make radical changes to our diets.

Another symptom of mucosal lining damage is present when David has company, or when our birds start making a noise and chattering. Talking and general noise seems amplified for David and at certain volumes it becomes unbearable for him after while. We both enjoy seeing people, but sometimes it becomes difficult for David to deal with.

Nausea can be a problem too. Whilst it isn't there all the time, when it is present, it destroys David's appetite. My nurturing instinct is to try and give David all his favourite foods to try and help him get better - sadly when the nausea kicks in, he doesn't want to eat just in case it makes him sick. Sometimes the nausea gets the better of him and he is truely sick - that is very nasty. It upsets both of us, but worse still, it can often put him off eating for even longer. Our GP has prescribed some drinks which are nutritionally complete and these help when David isn't up to eating, but they aren't a substitute for actually eating.

Getting around is also now more of a problem for David. I remember times prior to the nasty "big C" when he used to stride out and I'd be scampering along behind him like a small child running to catch up with their parent. His pace is more sedate now, he is getting more nifty walking around with his stick but walking is an effort which tires him out.

I try not to let things bring me down too much but it does upset me that cancer has robbed David of much of the enjoyment from his life. He liked driving his car, riding his bike, skiing, tending his bonsai, taking photographs, walking our dog whilst she was alive and many other things. Most of these things now are strictly off limits. That is until he has beaten this thing. Believe me, if anyone can beat it, it's David.

I could ramble on and tell you many more things which are more difficult but I won't as I've had you reading this for too long already. May be another day.

I had a CT scan yesterday: this took place as I had had the first three sessions of Chemo. It is to see what progress has taken place and whether the chemo has done what it was designed to do i.e. rip out the cancer violently. It has certainly had a damned good go - judging by what it had done to the good parts of my body. It is also designed to see whether the right chemo chemicals have been used as the primary source was not discovered. I assume this means that if insufficient progress is made then different chemicals can be used.

It has been a gruelling First Session.

I am still being told by the Doctors to selfishly get rid of anything that distracts me from concentrating on beating the disease. All outside interference preventing this one objective should be put aside. This can be very difficult as life does go on. I have by and large tried to do this. Whether it has worked remains to be seen. I have worked on various positive thinking and visualisation techniques both by myself and with the assistance of a qualified therapist. It is a technique that is amazing in what it can do: there will be many sceptics out there but no matter if I think visualisation works for me then I will carry on with it.

Last weekend someone came to visit me who I had not seen for many years - I can't remember whether I have told you. He used to own the gym where I used to train and body build - starting in the 1980's. He used to plan my training routines and generally supervise my training. On occasions he used to take me round the gym on the routine; it was exhausting when he did this. I would start to flag and he would start to cajole me and push me and generally have a go: put the weight up, one more rep on this exercise, one more set here, don't forget this weight, you have forgotten this and so on. By that time I was, I thought, at the end of my strength and could not lift another thing. I was wrong. He would say in the middle of all this, "See yourself lift that weight" " See yourself do another set". I was convinced I could not. But I started to be able to see myself in my mind doing what he was telling me to see. The visualisation would get so vivid - I would actually then be able to do physically what he was telling me in spite of how I felt ! I convinced myself that I could do it and I could! This would happen over and over again - it was amazing. It was the mind taking over.

We spoke about this when he came to see me. I told him I was still using the techniques. He was pleased. This visualisation is the core of the counselling and help I get from Frances who comes to see me. Again the experiences are quite amazing. I visualise the cancer to fight it. I visualise the entire body healing process. I visualise me being healthy and strong again. It is a powerful experience and it is also a tremendous mental boost to have these impressions.

I will be carying out these visualisation sessions many times between now and Thursday - results day. All I can hope is that all the weapons I have had at my disposal - there have been others - have been useful.

The transfusion has given me more energy: again I can only say thank you to the unknown donor whose blood I used. Hey I have gone on long enough today so will finish now but....

..I'll be back

I have had a blood transfusion.

Yes this happened Monday of this week: it was probably likely to happen as my HB levels were down on what they should have been. I did not want the transfusion; i went to the hospital on Friday because I had a skin rash - I was told and have been given it in writing that as I was having chemo I was to contact the chemo unit if I had the slightest thing wrong with me. So if I had a little temperature I was to contact the unit. They would check it out and if necessary give me blood tests to make sure all ok. Chemo can and does destroy good cells as well as bad. So any way I had this rash, they gave me blood test, there was a lot of stroking of chins by the staff while they looked at the results and they decided it was a blood transfusion for me. Apparently more people have blood transfusions than we all know.

I arrived at the Hospital in good time for my appointment - as always my rock Sarah took me in - she could not stay as she had to go to work. I went in and after the usual security preliminaries I was connnected up and given two units. One unit is one donation from one donor and is anything between 250 ml and 300 ml. It is trickled into you very slowly, presumably to ensure there is no rejection problem. It took 4 hours.

When the blood was all in they disconnected me and I was allowed home. While I was at the hospital I mentioned that I had had stomach problems. Would you believe they decided to take some blood for testing while I was having the transfusion. So there I was with blood trickling in to me through my right arm and they were taking it out as fast as they could out the left arm! They did n't need much which was good because, strangely enough, it hurt on that occasion.

Since then the stomach problem has got better - I hope - the GP gave me the appropriate medication. But I have had two sleepless nights: the one because of the stomach and the other because of the pain in my bones. I don't know why the pain should all of a sudden come back unless the effect of the stomach problem was to "dilute" the efficiency of the MST tablets.

Any way thats about all I can tell you for now except to get you to wish me luck - I am having a CT Scan Thursday this week to see how the chemo has worked etc. I have mixed feelings and emotions on this one. I hope I have been positive enough to ward it off - if I have n't what then? If the oncolgist says that the chemo is not working what else is there to beat the cancer and get rid of it? So I am looking forward to it but have some reservations.

I'll be back

Wednesdays blood tests results were ready when I saw the oncologist Thursday: He said there was a slight improvement in the HB levels and I was able to go ahead with the chemo session. That was good news to say the least: I was dreading getting there and being told we could not do the session - the chemo is a lifeline!

I was warned that if the HB levels were bad they might have kept me in hospital to give the transfusion there and then. What was worse was that it can take hours and hours to do the transfusion - I don't know why - I might have been there overnight with the chemo being delayed whilst they checked the bloods again. All in all, a consequence I did not want. Anyway, it did not happen and the session went quite well.

The next thing on the agenda is a CT scan and more blood tests in about 3 weeks time. These will give me further information as to whether the cancer is beating a hasty retreat and also plan the next treatment cycle from there. The oncologist takes into account such things as blood tests, CT scans and my body's reaction to chemo sessions in deciding the next round of treatment. He thought from my reactions that there was nothing in there to prevent more chemo. Other things need to be investigated.

Sarah and I are going to see if we can have a few days away from home somewhere local to have a change of scenery and a bit of a break. We need ideally to try and find somewhere that enables me to crash out if needs be but also gives Sarah chance to occupy herself with things she might want to do. We both need to look at something different than our four walls! The planning is a bit more complex than normal as we have our 3 birdies to consider! Murphy is still wary of me - he is the eldest African Grey. Lily the youngest Grey seems to be discovering me and Jasper the Black Headed Caique is no different - just noisy!

Isn't the weather miserable? I took my camera out one afternoon last week and really enjoyed myself (but over did it). I want to get out again with the camera in some decent weather when it is not windy, raining and cold. It's strange but the cancer makes me feel the cold so much more than I ever have done!

Anyway, thank you all for your comments and support.

I'll be back!

Time flies - I am coming up to my third chemo session this thursday. I have the blood tests later on today, I see the oncologist first thing thursday and if he is happy with the bloods, chemo will follow later in the morning. After this chemo session I have a break and more tests to see how the chemo has worked. Assuming it has worked it might then be I have more chemo - or we change treatment. We shall see.

It does seem a long time that my wife and I decided to create this site - I had reservations but my wife thought it would be a good thing to share the experience if we can call it that. I have to say that I agree with her totally. Sometimes it has not been easy opening your soul in this way but I do somehow feel comforted in the sharing of all the experiences - good and bad. It has also taught me that people do care even if they feel embarassed to show it face to face: people do care if they take the time to read the stuff I write and, even more surprising, comment on it!! People are mainly good rather than anything else

I do not look forward to having the chemo - the side effects can be difficult - but I do look forward to seeing the results of the treatment. I have felt better since chemo number 2 but in the last few days I have been in some pain - that I hasten to add has been my own fault. I always do too much and also I tried to get a photograph from a difficult angle which twisted my back. Were it not for those things I would have felt marvellous - I was getting more mobility, sleeping better, better outlook and generally feeling good. It was my own fault so now I know I must pace myself very strictly and the moment I start to feel tired etc I shoud stop say "Enough" and then rest for a while.

I had a very enjoyable day yesterday: I met up with a friend who I had not seen since University days - I was reminded that was 37 years ago. It was a long time. He got his degree at the same time as me. From there our lives were very different - he was in industry and travelled the world and I was in private practice not getting much further than the office!! However we did both enjoy our professional working lives. We both enjoyed the reunion and my one regret is that it will be difficult to maintain regular contact - he lives on mainland Europe. It was a great day and a pleasure to renew the friendship.

I seem to be rambling in this blog - so will finish now. Let you all know about the chemo.

I'll be back