Bye bye bag

Are you still there? ... I thought I had better check rather than presume you are hanging on for this long overdue post.

The Hickman line removal was a complete success. I have a new scar to add to my collection of 6 which I have accumulated over the past year. It's healing nicely and there were no complications (phew).

The paresthesia (pins and needles, tingling and numbness) in my hands and feet has got progressively worse. I find hand writing difficult (but I can still type!) and I am all fingers and thumbs. I seem to drop things easily but, thanks to the numbness in my feet, it doesn't hurt when I step on the broken debris on the floor. The consultant says that this side effect is very common after chemotherapy and it will improve, but it may take up to 6 months to get over chemotherapy completely. On the plus side, the tiredness is gradually improving and I can now walk to the shop and back (1+ miles) without collapsing in a heap on return. I've also enjoyed pottering in the garden and sipping the odd half of beer or glass of wine in the recent sunshine (hooray... on both counts!).

I was in hospital Wednesday for pre-op tests and 'assessment' and yesterday I went in for a scan. This has all been arranged in a bit of a hurry following a meeting with my consultant only last week. As my energy levels have improved I have been doing more and more including a few meetings for work, so it's been a little fraught re-organising the diary to fit everything in. The biggest challenge was Thursday's scan - I had previously advised "any time except Thursday at 1000" since I had a work meeting in the office. So it was almost inevitable that the appointment would come through for "Thursday at 1000"... and it did. I tried hard to move the appointment but the radiographer who was required to scan my colon was only available on Thursday morning. I made the mistake of believing the clerk who assured me that I would be able to work afterwards since it was only a 20 minute procedure. When I received the confirmation letter I spotted the word 'enema' and had my doubts - I checked with the nurse on arrival at hospital - a less confident "Should be ok" and, sure enough... I ended up standing up the boss, missing the meeting and unable to stray more than a few yards from the smallest room until later that evening.

Wisdom gained:

• Clerks are not medics
  
• Forget work following any medical procedure - medics only have the experience of giving rather than receiving said procedures
  
• Extra caution required if procedure involves any part of your body which you have not used for 8 months
  

I will be having my arse reconnected later today - in at 12; operation at 4pm. It's 1.5 hours, so should be much simpler than the last operation and I hope to be home early next week. I'll let you know more when I am next able to sit and type comfortably.

Next op

I'm now booked in to have my Hickman line removed on Wednesday. This is a minor op under local anaesthetic which is only "a little uncomfortable" according to the consultant - this is of course doctor speak for it's going to hurt like mad and I guess that means I will be a bit sore on Thursday. Despite my wimpish fear of any medical procedures I am looking forward to this next step in removing some of the medical equipment that adorns my body.

I'm now three and a half weeks away from my last chemotherapy infusion and I would like to report that I am getting back to normal. Unfortunately, my impatient mind must wait a little longer. The tingling fingers and numb feet have actually got a little worse since the last treatment cycle - apparently this is not unusual and it may take months to go completely. Tiredness continues to be a problem and it's weird - a bit like driving a car with a broken fuel gauge - I feel fine and attempt a short walk only to that I struggle to make it back home, without any warning suddenly I find I have no energy and need to sit down and rest. Sarah is now getting used to this having gone to collect the car to pick me up after my last walk, and yesterday on returning from the kids guitar exams in Bath, having to all but carry me back to the car park.

I'm sure it's just a question of time, and I know I need to be patient and take things steady. It's very comforting to feel that the worse part of my treatment is now behind me and I can look forward to getting better rather than more ill.

The best things in life are free!

Heh! It's my birthday!

Despite feeling exhausted, I feel very happy and I have much to celebrate. I'm having a good day - let me share some of it with you...

• The sun is shining and bringing with it the promise that spring is just around the corner stimulating thoughts of renewal, a fresh start and new growth (I'm thinking beautiful crocuses like these outside my window, rather than nasty tumours!)
• Organic bacon and fresh eggs from the farm up the road for breakfast. Is there a better way to start the day? - especially when you are trying to convince yourself you could give up being a carnivore! (Eating too much meat is widely considered to be a factor in colon cancer).
• The White Album from the missis for my birthday and two tickets for the theatre in April. A playable copy of the eponymous Beatles album (I have a warped vinyl with dodgy looking burns on the sleeve reminiscent of a misspent college life); and the thought of going out of an evening. Ah the simple things!
• Two cards (so far) of young lads racing about on quad bikes (actually one is a go-cart). Could this be a promise of felling a little younger after 6 months of feeling old-old-old.
• Mum coming over and, for a change, she is visiting me at home instead of hospital, because ....
• I'VE FINISHED CHEMO. I should be having my final cycle today, but after meeting the consultant yesterday, she suggested that my exhaustion and worsening side effects indicate that my body has done enough. She also confirmed that she didn't think that, given my risk factors were fairly low, missing the final cycle would have no detrimental impact of my therapy.

I can't express how relieved I am to finish this 2nd phase of treatment. Although it started out ok, it has progressively got harder and harder and I can't wait to start cleansing myself of the accumulation of toxic pharmacology.

I will have my Hickman line removed over the next two weeks. I know this will spoil my chances of a new career in pole-dancing with my integral tassels swaying from my right breast, but on balance I think it will be worth it!

Within the next month I will be referred back to surgeon to have my stoma reversed. This means I will have one of those new-fangled arse things complete with special features of integral storage, control and sound effects. Simple things....

A Challenging Read

I've read a few books on cancer - mostly loaned by friends and well-wishers. They are not usually easy reads because they have such strong opinions on the right path to adopt, often rubbishing your own chosen route. I understand that if you don't have cancer and read a book which describes an astonishing recovery, it is easy to see this as The Way, especially if you have concern for a friend who is suffering from their own ordeal with cancer. Most of these recovery stories are quite radical - I have yet to see a book titled: "How I Survived Cancer through Conventional medicine", although I don't doubt there are countless medical texts along that line. I have noticed how difficult it is for friends to hear my gentle protestations explaining why I won't be following alternative route xyz, yet I know their conviction is borne purely out of concern for me. Cancer (and I guess other life threatening diseases), has a profound effect on the individual and it is life changing. Right now, my chosen path is conventional medicine supported by a strong positive attitude. If you stop working, as I have, there is a plenty of time to ponder over what it really important in one's life and a number of life-style changes come to light including healthier eating, learning to devote more time to the mind/body/spirit and the realisation that being a workaholic is not likely to be the route to longevity. Once I had understood that I had made these choices, I felt fairly committed to my chosen path and other routes for healing seem like a distraction from a difficult and long process. That is not to say that I have ruled out radical diets, acupuncture, herbalism, etc. -- far from it, these alternatives are available to explore should my chosen route prove unsuccessful (and I am well aware that this is a possibility). 

A couple of weeks back a neighbour recommended "A Time To Heal" by Beata Bishop (a great name - perhaps more suited to denunciation of the church). This is the most challenging book I have read to date and I nearly gave up on it, but something kept me going and there were some positive conclusions to draw by the time I reached the end. The author had melanoma (an aggressive skin cancer) and initially follows a conventional medicine approach having surgery to remove a substantial tumour in her leg. This is partly successful, but the cancer persists and before long further tumours grow. At this point the author loses all faith in her medics and critically condemns western cancer therapy as cut/poison/burn (surgery/chemotherapy/radiotherapy). She is particularly disparaging about her own surgery which she describes as nothing short of mutilation. 

This is challenging stuff to consider when you have been mutilated and are in the process of being poisoned; it challenged my convictions and made me feel a little depressed. The surgery is always major, because there is always more to remove than the tumour itself - 10-14 lymph nodes and a good deal of surrounding tissue is not unusual for colon surgery. It's a tight space and damage to surrounding organs is not uncommon. I don't have the same abdomen I had 8 months ago and even after the ileostomy is reversed I am aware that I will need to accept that many things will be not be as before. Fortunately I never was much of a beach hunk, nor did I have a cast-iron constitution, but I sure will miss that impressive 6-pack ;-) In the same way, chemotherapy is such a poisonous experience, most especially as the toxins accumulate. My blood tests show how much weaker my immune system is and the liver function is clearly not able to recover until treatment ceases as I become aware of extreme tiredness; a constant tingling sensation in my fingers and toes, blueish feet and countless dark spots on my skin. In my mouth, taste has died a sudden death and my tongue wears it's yellow fleecy coat long after weather conditions have improved. I know there is a good deal of truth in Bishop's words, but I don't want to hear it right now.

I talked to Sarah, which made things worse: supporting someone who loses confidence in their ability to win the battle is inevitably much harder than supporting a combatant with even the faintest whiff of victory ahead. But I wasn't giving up, I just felt a little battle sore. There were so many other weapons in my armoury which were not [yet] being addressed in the book: the mind and spirit are being exaulted like magical talismen and the body is being treated to huge amounts of rest. With a nod in the direction of the book, my diet is good and healthy, free of it's usual intoxicants of alcohol and stress and with a fraction of it's usual caffeine overload. Reminding myself of this, I read on.

My perseverance is warmly rewarded as the book reveals a number of late secrets...

Not relishing the idea of further surgery and chemotherapy, Bishop finds an alternative cancer treatment known as 'gerson therapy' which involves an extreme diet. After 8 months in an American gerson clinic, following the therapy religiously, Bishop is frustrated by her slow progress although she is clearly  still convinced that the diet is the right thing for her. Gerson therapy is extreme and involves a total abstinence from meat and diary with almost exclusively raw food. There is a strict regimen which involves drinking freshly prepared, organic vegetable juices 13 times a day; taking 3 caffeine enemas to stimulate the liver and drinking only purified water. The liver is further supported by daily liver-derrived injections (although this has now changed due to the difficulty in obtaining these products). As she returns home, she employs help to prepare the juices and generally assist in running the house since the diet renders the patient quite weak. At this point, it strikes me that this diet is not altogether natural and could even be more intolerable than chemotherapy!

The author's condition does improve for a while, but she then suffers a further tumour which makes her  question the diet hard before concluding that the missing ingredient is the holistic approach which was a familiar part of her life before becoming ill. Bishop reconnects with her Buddhism-based spiritual beliefs  which helps her revive her confidence that the illness will eventually pass. With the help of a counsellor-friend she explores the original cause of the cancer and, through visualisation, she identifies that throughout her life she has carried a burden of resentment associated with her upbringing. She invests in more therapy to work through this and 10 years on she is free of cancer. The book concludes that gerson therapy, a holistic approach and identifying the root cause all contributed to her success in overcoming cancer.

Halleluja! Common sense at last; the closing chapters vindicate my own findings as I have found strength and courage in exploring the spiritual side in my own life including meditation and visualisation. I'll save the detail of the latter for another time, but suffice to say I made the same conclusion when I consulted my own life coach and now good friend, Nigel. I had the idea that I needed to come to terms with the daunting thought of the major surgery in front of me to insure against the embarrassment of running away from the operating theatre, screaming with fear at the last possible moment wearing nothing more than an open-backed surgery gown. Nigel largely ignored my request and instead urged me to dig deep within to try and identify the cause of the cancer. He guided me through a strangely uncontrolled visualisation experience which uncovered an unprompted sense of resentment. I  subsequently analysed this and associated it with giving too much, never saying no and failing to find any time for myself - quiet and solitude.

A Time To Heal fully tested my own conviction almost to the point of giving up only to restore it again in it's final chapters: a challenging read became an extremely worthwhile read.

I find Nigel's "Blog at Bedtime" thought-provoking reading - you might like to check it out.

Chemotherapy session 10 -- nearly there!

I'm writing from bed with very low energy levels as I embark on the tenth cycle. The cumulative toxicities of the treatment are getting quite significant and I get extremely tired and no longer fully recover from the side effects before embarking on the next session. I spend most of the first week of treatment in bed (6 days last session) and find I only have a few active days before the next treatment session. This has it's own problems - as I begin to feel better, it's very easy to overdo it and squeezing little things such as opticians, barbers, light housework or a work meeting easily takes it's toll before I realise it.

Last Tuesday evening, I became aware of a mild pain sensation in my chest and then noticed that the entry point of my Hickman line (temporary central line inserted through my chest into which the chemo drugs are infused, to reduce skin side effects) was quite inflamed. Such minor infections can become very severe because the immune system is severely compromised by the chemotherapy drugs, so we rang the hospital. After a call back from my chemo nurse, we decided to await the next day when I could would be visiting hospital from pre-chemo blood tests and a meeting with the consultant. Further examination on Wednesday, reveals that there is a mild infection at the wound site and blood cultures are taken to ensure that there is nothing more sinister lurking deep inside where the line enters the main vein feeding my heart.

In the afternoon, I have a meeting with the consultant, who casts asides any fear of a line infection - apparently, I am nothing like ill enough. She suspects the infection is superficial and hopefully, despite my blood counts being "on the deck", I will fight it off. Anti-biotics are prescribed just in case, but I am not required to use them unless it gets worse. (It is improving, but very slowly). We also discuss my exhaustion and increasing side effects: the tingling in my fingers which is persisting longer and the death of my taste buds. It's not that I can't taste things, it feels like you have severely burnt your tongue and the burning sensation swamps any taste when eating. The tingling is the biggest concern since this can persist beyond chemotherapy (in rare cases permanently). The consultant explains that it's important to monitor the side effects closely at this stage, since there is little point in keeping the treatment going if there is a significant risk of long-term damage or infection (the blood counts won't recover until treatment stops). Ideally, we will complete all 12 sessions, but if there is a line infection, or the side effects get more severe, we stop. Statistically, completing 80 - 90% of the treatment doesn't seem to affect overall outcomes too severely. This is a huge relief to me, I'm not quite ready to throw the towel in yet, but it's nice to know it's close to hand. We will review the 11th cycle and decide based on how well I complete this 10th cycle.

The will to write the blog is ever present, but increasingly more so now, the energy to pull it off just isn't there. Sorry! It must be frustrating to be "a follower" when there's nothing to follow. Bear with me, I have copious notes in my journal and I will write when I can. On the plus side, my spirit is in good shape as I write this with a light heart which just about balances the desperate desire for the treatment to end!

I was recently reminded of a Buddhist tale which seems highly relevant to me now:

An Indian prince gave his ring to his jeweller, challenging him to engrave a phrase upon it which would sustain the prince in terms of great adversity and restrain him at times of great success. The jeweller returned the ring with just 3 simple words: "It will pass"

This is a great reminder that, no matter how hard things seem, it is always transient. Better still, I love the more subtle reminder that we need not to get too carried away with the excitement, the highs, the tinsel. To my mind, most of life's true jewels lie in the realm of normal everyday life, yet as humans we are just poor at noticing this.

Snowy Wintery Loveliness

This morning (Wednesday) I woke up to a blanket of snow, around 8” deep and the deepest we have seen in Westwood since we moved here 17 years ago. The kids were outside playing in it at 8.15am and by 10am the hill in the field below us was awash with excited kids with sleds and parents delighted to heed the highways agency advice of avoiding non-essential journeys -- such as work! The field was a Christmas card, surrounded by trees holding up heavy branches laden with a thick dusting of snow.

Poisonous Chemotherapy Nastiness

I was due to visit hospital this morning for a blood test and consultation with the oncologist. All being well the plan was for chemotherapy tomorrow (Thursday). I didn’t expect to use my ski-wear this year, but it did come in very handy this morning when I went out to check on the roads. Sarah left her mini on the road last night because the lane leading to our back drive gets icy very quickly, usually making it impossible to reach the road. Both of our cars are front wheel drive and pretty useless in the snow, especially my heavy “pipe and slippers” Jag estate which is shod in completely inappropriate low profile rubber.

After locating a large white blob of snow which could have been hiding Sarah’s car, I mused at the thought of a world where everybody drives the same vehicle. Stand aside Carozzeria Pininferina, make way for Delia-styled motors, looking like a clumsily iced Christmas cake. I picked the smallest blob, clearing the number plate first, to limit the number of neighbourhood vehicles I had to uncover before finding Sarah’s car. The road was virgin snow and free of ice, so I trudged back home to find out if there was anyone to see me at the hospital.

My meeting with the consultant turned into a quick phone call while watching the kids attempting to build an igloo and hurtling down the hill on their plakki sledge. With the low temperatures forecast for our area: -7 to -10, I expressed my concern that I would not be able to get into hospital for chemo tomorrow, and that I probably could today and was advised to go for it. So I scaled the hill back to the house thinking that we really could do with a chair lift and little halfway-hut selling glühwein to complete that alpine feel.

I called the chemo team and while they checked with the test lab and pharmacy, I packed a bundle of overnight clothes, shovel, sarnie and a flask of tea - just in case. I am so keen to get this chemo thing out of the way, and I really didn’t fancy missing a week on account of tomorrows ice and Friday’s further snow if the weather bods are on the money. I therefore decided I had an essential journey and headed out onto the roads of Westwood snowpark. It was quite exciting in Sarah's go-cart, but I managed to avoid any dents by going at snail-pace per hour having watched another resident nearly take out his garden wall in a most impressive piece of under-streering as he negotiated the 90 degree turn into his drive. Once on the main road it was a breeze - the roads were quiet and clear.

So here I am infusing away 1 day early and planning on staying in the house for the next week while the cool weather takes hold. By the end of next week I will have cleared chemotherapy cycle 8 - 75% of the way there. Milestone!

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No internet in hospital today and hooking my mactop to the mobile completely defeated me today (chemo must be killing the grey cells too), so I've just retro-posted all the stuff I wrote in hospital today from the comfort of my bed at home. There are two more 'new' posts in December - Saying No and Hugh Fearnley Whittingstall’s Constipation Cookies...