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Ave, from New Zealand aged 54 when diagnosed, diagnosed with operable adenocarcinoma pancreatic cancer
Ave's story is part of a "book" she has written on her travels and then journey with cancer. Part is a correspondence with Alison in the UK who she met on her travels. In May 2007 she said: "I had Whipples in March 2004 for adenocarcinoma starting in the bile duct. Over three years on, I am feeling an incredibly healthy, energetic and lucky person. My husband, Mike, thinks I have adult ADHD as I never sit still!! I have written a book about our travels but it was triggered by my illness, so have included exerpts from it for you, if you have the time!! It was a fantastic way of getting life back into perspective again, and will be a nice thing for my family to read. Up until just last week, I have only been in contact with a lovely lady, Donna, from USA (the only survivor I could find on the US PanCan website!) so it's exciting for me to now have contact with 3 New Zealanders, and am thinking I may do the support course in Christchurch sometime, so I can be of some support to others. It is bizarrely exciting (in a macabre sort of way) but scarily lonely to be diagnosed with a rare cancer and especially one with such a poor survival rate. When I first read there was a 5% survival to 5yrs my reaction was... shut down the computer and go screaming to my neighbour!! Poor thing.. then decided, bugger it, I'm going to be that rare and special breed of 5%.. and so, to date, here I am. No chemo, no radiotherapy, just time, love and lots of humour and family/friend support. I guess going back to work (as a nurse) also made me have to feel normal pretty quickly!! So, I hope my very positive outcome will be of benefit to some." March 2004 Dear Ali UK… Today’s ‘D & D Day’- ‘Diagnosis & Dissection Day‘. I am compiling this email in my head to you while waiting for my turn to be zoomed away in my bed for the operating theatre in an almost dreamlike state. That may well have something to do with the Premed the nurse gave me about an hour ago? A strange thought invades, such as - ‘when will I be able to put my banana bar back in my bellybutton?’ I know, I know, crazy isn’t it but when one reaches 50 years of age and doesn’t have the courage to do a tandem parachute jump, hang glide off a cliff or bungy down to the river, what‘s left to show how big a step it is? It‘s been there for over 4 years now. Darn it, I hope the surgeon doesn’t need to cut anywhere near my little tattoo, either!! Nic, our son, designed my initials for my Christmas present before our overseas venture, so it’s extremely precious. I had said jokingly, that at least I have an excellent identifying ‘mark’ if ever needed! I’m getting a little weary of always being chirpy. Mike knows it all - those scary nights when it all becomes too much, wondering what really is round the corner? When we were planning our ‘Big Adventure’, we were both pretty light - hearted. even blasé about saying to friends, we don’t know what’s round the corner so will do this while our knees still bend. How right we were! But, whatever the outcome, I have had an awesome load of life experiences, laughter and loving. What more could anyone ask for? Perhaps just a little more time to have with my family and new wee grand daughter? So, on waking from the anaesthetic, I will know where my future is heading a little more clearly. It’s been tough since Christmas Eve when I was diagnosed with Acute Pancreatitis and sent home with pain relief, told to stop drinking (alcohol that is!), stop smoking, eat no fat, nutty, spicy or rich (that includes chocolate) food. Really not a lot left is there? Bloody hell, this is Christmas Eve!! My daughter, Bec, had just spent four days beavering in the kitchen preparing this awesome spread for Christmas Day!!!!! Almost everything had either booze, butter or both in it. So, I made a rash decision - gobble down pain relief all day, enjoy the day, have a little sparkling wine, well, who could refuse a Fraise Strawberry Bubbly for breakfast on the beach? It was worth it, starting with Mike’s and my twenty-eight year tradition of toasted ham & pineapple sandwiches with Spumanté for breakfast, followed later, much later, by the three course meal Bec cooked which was so divine we had to invite our neighbours over to share the three desserts with us, not to mention the Portuguese tarts (exactly like the genuine ones we tasted in Portugal) and gingerbread house, complete with men!! On Boxing Day I put on my gloves to fight this pain and sickliness, Ali. Just wish you weren’t 12,000 miles away, because your sense of humour….. that must be, of course because you’re English, is what I really need right now. Oh darn, Ali, looks like it’s my turn, the smurf-like folk in their theatre garb have arrived, so will send this as soon as I’m back behind that awesome computer. ……………………… January 2004 Dear Ali UK… No smoking, No alcohol, No food! Sounds like a New Year’s Resolution list doesn’t it? I guess in a way it is, just that it isn’t by choice. I have been in hospital, Ali, with horrendous pain, so the answer to that is “Clear fluids Only” until investigations sort out what is giving me all this grief. In the meantime I am turning the most amazing sunflower yellow, which up until recently people have put down to an awesome tan!!! I’m home on leave for the weekend at present so, will get Mike to write once there’s any further development. I also have some terrific friends who are caring for the garden, because they know how much it means to me, and after the major clean up I had to do when we got home, would be ghastly to see that wasted.
Love Ave
“Hi Ave & Mike, Good to hear from you, hope you had a good weekend! I remember when I was in hospital a couple of years ago having chemotherapy, the weekends were interminable!! I was there on a bank holiday weekend and wasn’t allowed weekend leave and got extremely pissed off!!!!!!! They do seem to be taking their time to do this ERCP, although look on the bright side, at least you’re not having to deal with the NHS. They probably wouldn’t do anything til you picked up MRSA!! I’ve got a man in the house painting the lounge ceiling at the moment so tomorrow I’m going to start on the walls. It seems to have inspired Alan as he’s making lots of plans for sorting out the hallway and stairs. Have been invited to a meeting at the council tomorrow because we are now part of the conservation area and as such they have the funding to tarmac properly, that disgusting road where we park. The meeting is to discuss an effective way of making it residents parking only which is another bonus, so we are pretty happy about that. The big patch of land next to it is going to have low level apartments for the over 50’s so it’s looking as if our gamble has paid off. Can’t see the over 50’s giving us too much trouble and with proper parking will do our house price a big favour!! Better go ‘cos loads of housework to do as usual - you take care of yourself and let me know how you’re getting on!!
Lots of love
Dear Ali UK, Awesome to get an email from you ? Am staying with Ave, my friend and her husband in Wellington, and Mike’s here for a couple of days which is lovely. Really nice to be out of the hospital, but wish they would get on and get me pain free… it’s bloody awful. You remember when I went to the GP in Cambridge (UK) with those ’squeezie’ things? I reckon it was all connected now, on thinking back. Yes, am having an ERCP on Tuesday, so hopefully after that things will improve and I can go back to Blenheim, maybe even home. The good news is…… I’ve stopped smoking…….. Almost two weeks now, and without patches. Just don’t fancy it now AT ALL ? Anyway, I’ll be in touch again down the line a bit when I’m not feeling so crappy.
Love to you all!!
February 2004
Dearest Ali,
Fantastic! I had a phone call from Alison, just to be in touch. It was stunning to think we were so many miles away because it was a really clear reception. Apart from all the catch-up stuff Ali gave me this quote from Alan: “well, if the bloody cancer kills Ave off, we’ll still be able to keep in touch with her through the Psychic median, Colin Fry, he’s really popular in New Zealand right now” I loved it and was chuckling for ages after she told me this, because while we were in England Alan had talked of this guy Colin Fry so much, as New Zealanders seemed to love him. I‘d never heard of him until then, but found when we got home he had a show on the TV!!
March 2004. Day of Surgery:
I had a reasonable sleep, woke and showered in plenty of time as I was fortunately the first case on the list. Before I knew it, I was dressed in the stylish ‘hospital property’ gown, TED stockings, paper knickers (I know, paper knickers, real passion killers) and wheeled off to the theatre. This was a very, very scary feeling. I think something must happen as a coping mechanism at this stage, as I’m sure, otherwise, I would have been leaping off the bed and going home! Instead I got a thrill, when the lift opened and all these poor people had to get out to make way for little old me!!!! Now down to serious business. The two anaesthetists welcomed me on arrival, all organised and ready for action. No time for changing of minds now. I had an epidural line inserted into my spine, was asked to lie down, a sedative was given intravenously……………….. Post - Operation: I knew absolutely nothing more til I awoke in Recovery at about 13.30. I was amazed at how comfortable I felt and reasonably wide awake, which prompted me to start chatting madly to the Recovery nurse. (Seemingly an effect anaesthetic often has on me!). I had a bit of a feel around under the sheets to see if I’d actually had surgery. Sure enough, I had a large dressing, urethral catheter, wound drain, naso-gastric tube, epidural cannula on my left shoulder and central line in the right side of my neck. What stunned me was that my throat was unbelievably more painful than anything else, and I had to hold my head when I wanted to turn it, as the central line felt so foreign. The Recovery nurse must have decided she’d had enough of my chattering, so rang the ward to come and collect me ?. My nurse really had thought I’d not be back in the ward til much later… that’s what happens when you chat incessantly to the Recovery nurse, I guess! Soon after I had arrived back in the ward, Mike and Ave, (the friend we caught up with in Los Angeles airport), visited me. Neither of them could believe I was sitting up chatting, reasonably comfortable and had such pink cheeks. ( I hadn’t had pink cheeks for months, usually yellow or anaemic pasty) I found that I had been given three units of red blood cells while in theatre, due to my anaemia. So that gave me a wonderful kick start to the recovery stage. It was lovely to be able to enjoy my visitors, as I had thought I’d be feeling very doped up at this early stage. Another delightful experience was to be able to suck ice as often as I wanted, having thought there would be nothing like that at all. It helped soothe my sore throat and ease the dry sensation anaesthetic often leaves in one’s mouth. Visitors gone, but beautiful flowers arrived. What an unforgettable time that was, the flowers were then put in a place I could see from bed which was just lovely. I was assured by my nurse that I would not have to get up that evening as I had thought would be the case. Must admit to huge relief as had been getting a little apprehensive about it, but evidently I was to have the first night off!!! So I spent the rest of the evening dozing, in between very vigilant nursing staff attending to my every need, regular observations and concern about my epidural pain relief not being as effective as it could be. So, on these occasions I was given supplementary pain relief and the epidural level raised as necessary. Day One: I was feeling pretty fantastic really, and had even passed wind (or farted!) overnight which I proudly reported. The staff were all being so terrific, and I was thoroughly spoilt. By the time Mike arrived again in the morning, I was up in the chair, after having a lovely wash. Suddenly I didn’t feel so great, the pink cheeks faded rapidly and I felt decidedly wobbly. So, back to bed for me. I felt as weak as a kitten but nevertheless pretty pleased also with progress so far. The day was spent leisurely dozing again between regular attention by the nurses and getting up to sit on the edge of the bed at least so I would do better the next time I got up. That was so good. I was amazed at the delight such small successes gave me, especially while feeling decidedly vulnerable and dependent upon others who were doing the job I normally do. The physiotherapist came to see me, going through the coughing, deep breathing and leg exercises with me and was pleasantly surprised I’d already been up in the chair. I became quite well known by all the Pain team members, as initially had a few problems getting stabilized into a pain free status. Once my epidural was working efficiently, they would still drop by to ensure all was well and that I was comfortable. I have since decided that it’s a very difficult thing to put a number to the degree of pain you might be in, which is what is frequently asked. Day Two: I awoke early, recapped the whole experience and chuckled behind the closed curtains, because I found it so incredible that the surgery was actually over with me feeling so good. In fact probably the best I had felt for years. I was still only allowed to suck ice but that was ok. The usual early doctor’s ward round went well. They were very pleased with my progress, in fact were rather amazed that I’d managed to get out of bed so well on my first day. I coped with being up in a chair even better this day, also pottering around the bed, and so regaining a tiny amount of independence again. Once again the rest of the day was spent improving mobilising with the physio when she called again. We went for a huge long walk, which as you can imagine takes a little preparation with drip/pump stands, wound drain, naso-gastric bag and catheter bag needing to be pinned securely. I felt so smug (not to mention exhausted) once back on my bed. I’m sure the physio was just boosting my morale when she praised me for the distance I managed! I snuck off to the toilet and send text messages to all those lovely folk who’d been in touch. It was the only place I could do it without being caught using my cell phone! Day Three: Early doctor’s round again, and the exciting news was that my naso-gastric tube could be clamped, and could have a cup of tea and free fluids. I will always remember that cup of tea, it tasted just so good. Then the naso-gastric tube could be removed which was even more progress. I’ll never forget that either. What an horrendously eye watering experience, and here I’d put these tubes down many babies’ noses and removed them without realising just what an awful feeling it was. Next my wound was redressed. It all looked very smart and neatly sutured with a cute little wiggly bit at the end which the registrar apologised for, but said he did it to match my tattoo! I continued again to be anaemic, so it was decided I should have another blood transfusion of two units, which once again made me feel so much better. I managed heaps of walking so after all this I was exhausted by the time I had visitors, who were going to wash my hair for me. They were some of my nursing friends and were wanting to practice their bed - hair washing skills!! So I relieved them of that task, saying I was much too tired Day Four: Another day of progress after being seen by the surgeon. I could eat and drink what I liked. The wound drain was removed, thankfully while the epidural was still in place, so was a painless exercise, and my wound dressing was removed and left open except around drain site. I was proud of it! The sutures would be removed 10-12 days post operatively. Apart from mild head wobbles when I got up which was due to the epidural evidently, I felt fantastic. I had the shower of a lifetime and hair wash, improved only by the fact that my nurse got her feet wet as well.. because she didn’t like wearing the enormous gumboots provided! I felt just so good when all dressed and surprisingly, not as tired as I thought I would, so managed to cope with wonderful visitors arriving for the afternoon, almost felt like a party mood around my bed. I did have a feeling of panic after a tiny dinner when I thought maybe I would ‘pop’ my insides, I felt my stomach area was incredibly tense, but my nurse reassured me that I would not have been able to commence diet if there was any possibility that could happen. Day Five: Another great start to the day. My Hb had risen to the best it’s been for months! At 1000 hrs my central line and Epidural were stopped, not removed at this stage and I was commenced on the oral pain relief, Severadol, two hourly and paracetamol six hourly. By 1200 hrs, it had turned into a day from hell. I couldn’t believe the pain, like knives and hot coals all round my midriff (pain score: 9-10 out of 10) then nausea, sweats and raised blood pressure. Fortunately the pain team was still on the ward, so as I burst into pathetic tears she got my pain regime reassessed and increased. Then I had new visitors which was such bad timing in a way, but at least it took my mind off a little bit, the horrendous agony I was in. I accepted all the pain relief offered to me, plus a sleeping tablet and finally went to sleep………. Day Six: I had an excellent sleep, waking at 0500 (I thought it was 0130!) feeling 200% better. So, more progress, and I was pleased I hadn’t weakened on the reconnection of the epidural, as now it was removed, along with the catheter and central line. My drain site was redressed, so now I had no tubes or attachments at all. This was real progress. Day Seven: I must have been getting spoilt, because now that I was well and truly on the road to recovery, I felt slightly deflated, probably because I had nothing that needed checking any more and of course had regained my independence which what I’d been striving for, but yet didn’t want to be forgotten by the staff either as it felt quite lonely after all the fuss that had been made of me. So, how bizarre is that? Time I went home, I would say!! I still had trouble with meal sizes, so the dietitian visited me and gave nibble things with the meal tray so I didn’t need to eat it all at once. Also she organised nutrition supplement drinks for me to take home which would help get some weight back on as I had lost about ten kilograms since I’d become ill, five of those since surgery. I was advised that I would lose more weight when I got home, but it would stabilise. Heavens, I have never, ever been in that situation where I have to put on weight…. long may that last I was feeling incredibly good and looking forward to getting home again, so got my bags packed, had to borrow a bag from a friend because of all the extra stuff I’d accumulated in the way of gifts, had phone calls from family and that all helped to make me feel better. Day Eight: Goodness, it was the first time ever I’d got up and made myself a morning cuppa! I had an early shower, shed the TED stockings and was all dressed by the time the doctors did their round. I was all packed, and had said my farewells to the fabulous staff on the ward. The Anglican Chaplain was accompanying me out to the airport as my husband was unable to get a seat on the flight back with me, which had made me pretty sad, but the Chaplain was a delightfully caring person who looked after me exceptionally well and he would leave until I was actually on the plane homeward bound! Home…. what a wonderful place, and so good to see Mike again, but I was exhausted after the excitement of leaving and flying, so once we got unpacked, I tucked up in bed for a siesta! Day Ten: It’s intriguing that while in hospital, it feels as though you make huge steps towards recovery with staff helping with everyday tasks, then once home it becomes a reality just how weak and useless you feel. I had my sutures removed this day, which eased the tugging feeling that had developed, and the wound looked extremely well healed. With this, I felt I was actually now completely on the road to recovery. Day Eighteen: Progress had been going along gently, with constant reminders from friends that I was to RELAX and take my time, so all I was dealing with was frustration about taking too long!! Once again I had become anaemic so was given the option of being admitted to hospital or monitoring myself at home. I chose the latter option and was reassessed a few days later. Four weeks Post Surgery: I have now moved on from being an invalid to convalescing, which in my book is big progress. I had the best biopsy news possible from the surgeon. The Adenocarcinoma was completely excised from with clear margins and all of the lymph nodes excised tested negative, so no further treatment would be required and I was given as good a prognosis as could be dreamt of. ? Ok, so I’m not into mowing the lawns or serious housework yet, but am certainly pottering at many tasks now. So, all in all, am only awaiting my follow up appointment with the surgeon in Wellington to give me full clearance and I’ll be back to work again. Three Months on…… I’m almost back to rights, having worked a few shifts at the hospital, mowing lawns again now ? and am planning another quick trip back to England to see the fantastic people I’d met and who had sent phone calls, cards and their thoughts all this way which I’m sure has played an enormous role in getting me up and running again. I was also been put in charge of organizing a reunion in Blenheim for all my nursing training buddies, which was a great success and so good to see them all again. It is incredible thinking about our trip and that we achieved everything and more than we expected is really over. We often wonder what was it that made us do what we did, when we did, and what made us make the comment “ you never know what’s round the corner, so we’ll do this while our knees still bend” ?How many times did we say to friends before we left that we didn’t want to wait til we retired because who knows, we may be dead by then? I have a huge debt of thanks to Nic and Lonaye as we had our granddaughter we were really looking forward to meeting, and also Mike for insisting he didn’t want to experience another English winter so was insistent that we came home earlier than I felt I was ready for. Instead we have had a trip of the proverbial lifetime, that I am alive to enjoy the memories and eight enormous photograph albums full of memory joggers. Anytime I need convincing that we really did this I look at the photos, because the toughest part of all this, is the dreamlike quality it takes on. I thought this would feel totally real forever, but it doesn’t. Guess I’ll just have to travel some more?
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| last updated 8th May 2007 |
| first created 8th May 2007 |
