Below is the weekly diary I kept following my distal pancreactomy, and the removal of my gall bladder and spleen. I was advised that it would take a minimum of 6 months before I got my energy back and my weight stabilised. In fact, it was more like 9 months and actually 12 months before I felt I had fully recovered. Fortunately by 14 months post op, I felt that I had fully healed and actually felt better than I had done in years.
Week 1 – Hospital, Pain Management, Food
I spent 6 days in hospital after my surgery. In addition to a general anaesthetic, I had an epidural, however it only worked on half of my back so the critical care team kept tilting me to help the anaesthetic spread across all my back. I had umpteen tubes going into and out of my body fortunately I couldn’t see them and they were gradually removed so I only went home with a bag covering my drainage site.
I struggled with pain relief – whilst morphine worked fine when I was moved onto Tramadol and Codine I had hallucinations so I preferred to have paracetamol with a bit of pain and a clear mind rather than to see people walking through the walls!
Whilst encouraged to eat, it is certainly easier said than done. I was so excited when I managed a dozen spoonfuls of Tomato Soup – an accomplishment. Readybrek was ok, and mashed potato with gravy was heavenly. Quite different to a hip replacement patient I saw tucking into a roast chicken dinner a few hours after surgery.
The most important thing though is fluid, fluid and more fluid.
Going home was a bit challenging, getting in the car was painful as were any bumps or potholes in the road, I had to ask hubby to drive really slowly.
A friend, who is a Doctor, popped round with some high quality arnica for me to take to help reduce the internal brusing.
Week 2 – Home, ER, Weight
It is so lovely being home, my sister has come to stay to cook for me, for which I am so grateful. I am only really eating very simple food; soups, smoothies, purees, baked potatoes, everything is as low fat as possible.
I can stand up ok in the mornings, but am in pain by the afternoon. I have pain in my back going up to the left shoulder blade, so I rest every afternoon. 10 days post op I visit the local nurse who changes my drain dressing and wound dressing.
11 days post op and I am sitting eating breakfast and feel wet around my stomach, the dressing over my drain site is soaking and the site is leaking. My sister takes me to our local ER at Good Hope Hospital who are amazing. I am seen within 15 minutes of arriving and am taken to the surgical ward to have the drainage site cleaned and a new bag fitted. I went back the next day for an ultrasound to see how much fluid was left and also it’s location, to ensure that it was in a position to drain out.
I have to sleep on my back with cushions under my legs and my arms by my side.
The 30 staples, securing the incision site, are removed by the local nurse, it is the most pain I have experienced since being in hospital even though I had taken paracetamol before they were removed.
Down to 120lb, my lowest weight since I was a teenager.
Week 3 – Walking, Eating, Sleeping
This week, I am home alone.
I still have pain by the afternoon, for which I take paracetamol.
I am out walking a little further everyday, I can walk round the block which is 300 meters. The rest of my time and energy is taken up preparing meals, after which I sleep.
I am taking antibiotics twice a day.
Week 4 – Visitors
This week my friends begin to visit which is wonderful but tiring.
I am now able to roll onto my right hand side and rest there for 10 minutes, before feeling uncomfortable.
Now that my 19cm abdominal scar has closed and is healing I am using Bio Oil to keep it soft and hopefully it will fade.
Week 5 – Driving
I realised I have become intolerance to dairy products. I have been having low fat yogurt, and milk in tea and coffee and have ended up with a cough and a streaming nose – lovely! Fortunately the symptoms disappear when I give up yogurt and milk.
I cautiously start driving again, freedom at last.
Week 6 – Walking and Sleeping
I walked 2 miles, yeah.
Still very tired, and having to sleep every afternoon.
Still on daily antibiotics, which seem to have caused me to develop oral thrush so am also taking Nystatin.
Week 7 – Holiday and Accupuncture
We went on holiday to Portugal, as we had booked it prior to my diagnosis and surgery. The traveling was tiring. Holiday food wasn’t as difficult as I had expected as there was lots of grilled food. I still needed to have a nap most afternoons.
I had acupuncture again this week, which I had started in January to ‘build myself up’ before the operation, now the focus is on helping my body to heal.
Week 8 – Back to work
I returned to work for 2 days this week – and was tired by end of week. I ensure that I have plenty of sleep by going to bed early and resting when I am not at work.
I can do light housework like dusting, washing up, cleaning worksurfaces, but I have to be very cautious with lifting and sweeping the floors is painful.
Planning meals is taking much longer, I need to think more about what I am eating ensuring my meals are low fat ie less than 35g of fat per day, no dairy, no alcohol, and limited gluten. I am trying to adapt recipes but most of my food is still very bland and actually I prefer it that way as I know it doesn’t cause me any problems.
Week 9 – Work, Tiredness, Depression
This week I worked 3 full days which was probably a bit too much. I have been so tired that I have been going to bed at 9pm. I feel frustrated that I don’t have enough energy and I feel depressed for no particular reason. So I start taking a multi vitamin supplement with plenty of B vitamins.
I have been snacking more by being at work, which has helped in that I haven’t felt overly full which has been good. However my choice of snacks hasn’t been good so I need to ensure that I have at least 2 nice snacks a day to help me eat healthily.
I saw my consultant again this week, who was pleased with how everything has progressed. My blood sugar was checked and it was 5.4, better than the consultants!
Week 10 – Pain, Tiredness, Speed and too much Fat!
After being overtired last week, I decided to work 4 shorter days this week (22.5 hours). Which seemed like a good idea but what I actually did was almost 3 full day with the need to only do 3 hours on the 4th day! Not ideal.
By Thursday evening not only was I tired but in discomfort that was bordering on pain, due to too much sitting forward at a desk and also bending.
But what I noticed most about this week wasn’t the working but the speed I was going at. Having spent 8 weeks at home convalescing my life was at a certain pace which included plenty of rest. But as a consequence of being back at work the pace of my life has increased, I even went round the Supermarket quicker! So for me the real lesson here is trying to be a bit slower a bit more relaxed and chilled in life in general. Which isn’t going to be happening with the forthcoming weekend.
It was a challenging weekend food wise. We went out for a local curry on Friday night, I had Vegetable Dansak and Pilau Rice. Then we were invited to an afternoon tea party in Malvern on Saturday followed by dinner out in Upton on Severn (3 bean smokey casserole with plain rice and gluten free carrot cake). By Sunday morning I had diarrhoea. Then we had Sunday lunch out in Tetbury and both my starter Asparagus Soup and my main Pea Risotto were served with an artistic drizzle over oil over the top, which I tried to eat round! I subsequently had diarrhoea until Wednesday evening (of week 11) and lost 2.5lb in 4 days 😦 all because of too much fat in my diet. I am not on Creon (pancreatic enzyme replacement), but my Consultant said I could have it if needed, however I am trying to go with a low fat diet which does seem to be working, however as I have just found out eating out is difficult, but it is still early days.
Week 11 – Cycling, Pedicure, Rest
Yeah, a Bank Holiday weekend so only working Tuesday and Thursday this week.
I went out for my first bike ride on the Bank Holiday Monday (on an old fashioned sit upright bike) and enjoyed a 3 mile flat cycle along country lanes. Physically I felt fine, no discomfort but I was shattered by mid afternoon, mind you I had had a busy weekend too.
I finally was able to reach my toes for long enough to paint my toe nails cerise pink, oh the joy.
I went for an acupuncture treatment on Wednesday, during which time I was casually asked two questions:
a) when was I next going on holiday?
b) did I think that I had gone back to work too soon?
It is gradually dawning on me that by having gone back to work albeit only for 3 days a week, when I am not at work I should be resting, and not even thinking that I should be doing any more than this.
Started to feel better on Friday food wise especially as my sister has been here cooking for me. What a difference that makes, she is amazing. Still v tired Friday and Saturday but better on Sunday.
Week 12 – Curry, Depression
Went for a curry Monday night had my usual Vegetable Dansak plus some naan bread which I shouldn’t have done and ended up with stomach ache and pain in my left side all day Tuesday and into Wednesday. Back to eating soup and pureed food for few days. Not happy, but when will I learn – not to eat out yet!
Struggling with depression. Feeling very fed up, with a limited diet.
Tried making vegan cup cakes using spelt flour but end up getting abdominal pain and bloating just like I get with gluten, so spelt is a no go too.
Hubby is on holiday and I am also looking after neighbours cats and watering plants for a week.
Week 13 – Too much, Blood Tests, Rest
Have totally over done it, too much lifting of watering cans and generally going at full pace, when I really shouldn’t.
On Tuesday, Iwoke up with acute pain in my upper abdomen similar to when I had an episode of acute pancreatitis but not quite as painful. Feeling nauseous. Phoned Doctors on way to work and had an appointment later in the morning. He did blood tests for amylase plus liver and kidney function etc. Should get results tomorrow. Went home to bed and slept.
The blood tests were all normal! So I just need rest and fluids.
Still in pain on Thursdays but then really rested Friday, Saturday and Sunday.
Week 14 – Careful lifting
Hubby is home, so I am taking it much easier this week and going much slower, which is making me think more about what I am doing, ie I get in and out of the car without lifting my bags across from the passenger side.
I am more aware of lifting heavy bulky items etc.
Week 15 – Weight
Lovely, had loose bowels from Thursday through to Monday and embarrassing smelly wind, which made going out for dinner uncomfortable as I had to nip to the loo regularly. Back down to my lowest weight ever 120lb, so not happy. It is such a struggle to eat enough of the right food to put weight on.
Acupuncture again, which although wipes me out for the rest of the day, means I usually feel better afterward.
Week 16 – Grief and Shock
Started the week well but soon slipped into grief, at the loss of my body and also whilst driving to work I had a sense of my insides being ripped out of my body!
So I did a loving kindness practice for my body 🙂 I assume what I saw/felt was just the release of shock from the body. Still very extreme.
From one extreme to the other now constipated!
I have been drinking plenty of smoothies with protein powder in them to build up my strength and weight.
I still get twinges in my left side, usually after lifting or stretching.
Week 17 – Feeling Normal
The first week that I have felt ‘normal’ and more my self. I am still having to spend more time thinking about and making meals.
I realise that my current priorities are Sleep, Food, Work and Rest, as I still get tired in the evenings.
For some strange reason I started craving Cardamon, and whilst at a friends I tried Cardamon tea which I loved. Surprisingly it seems to have help to stabilise my digestion which has felt so much better over the last few weeks.
I have bought some new trousers for work that actually fit and realised what a psychological difference they make. I am no longer wearing loose baggy trousers that I associated with my tumour, but I am wearing clothes that fit and am beginning to enjoy and celebrate my new body and shape.
I still have 3 tiny breakfasts at weekends which is great and works much better for me than just one meal. Also I am still sleeping mainly on my back, I can rest on my right side for an hour or so but can’t lie on the left, as it’s still to painful.
Week 18 – More food
My meal portions are getting larger and now that my digestion feels more stable I am introduction more new foods.
Finally feeling more ME, whatever that may be. My mood is lighter, I am happier and finally looking for joy and fun in my life again. I have more energy, thought it is easy to blow it all and feel tired quickly, so I am learning to balance what I do. Acupuncture again this week.
Week 23 – Tai Chi and a Nutritionist
I have booked a Tai chi and meditation weekend at Taraloka, a Buddhist retreat centre. I want to start exercising again but know that I need to take it super easy so I thought that standing doing Tai Chi would be the best place to start. It was physically more difficult than I had expected, but I loved the gentle and graceful flow of the movements and came away feeling relaxed and refreshed.
This week I also met up with a nutritionist who I had been to see about 12 months previously. She gave me advise on how to deal with the oral thrush I have been experiencing, which is due to candida. So together we looked at how I could get more probiotic foods into my diet along with some suitable supplements.
Week 27 Tai Chi
Since my Tai Chi weekend, I have been searching for a local class that teaches the same style (yang) but with no success. I mentioned this to my acupuncturist, who had seen an advert for a class in a local shop, so I dashed up the road only to find the class started the next day, result!
Week 28 – Holiday
Incredibly lucky to be going on another holiday, this time taking our son to Turkey for a week. All the meals were buffet style, and there was an incredible choice, which suited him as he’s coeliac and worked well for me as I could pick and choose all the low fat options, a great result.
“It’s no good crying over about your pain and discomfort when it was your own stupidity that caused it. What were you thinking, using minced lamb for a recipe when you are on a low fat diet. I know that eating on holiday gave you confidence to eat more generally but you were more disciplined in taking your tablets and also you were actually very careful with what you ate and most thing were vegetables stuffed with rice and a little bit of mince. But this pain and distress is a good reminder of how kind and gentle you need to be to yourself.” Especially as I had diarrhoea all Friday night, felt nauseous Saturday along with the anger and frustration and I was still out of sorts until Sunday evening. Also it was straight back to a simple diet.
Flu injection – I had a reaction to my first ever flu injection, I was in bed totally wiped out for 3 days and it was 2 weeks before I felt well again.
Whilst at the Dr’s for the flu injection they took bloods as I have been having hot sweats – it transpires that I am now menopausal too! But after all my body has been through its the least of my worries.
9 months – Weighty
Finally my weight has stabilised I am consistently around 126lb which I am delighted with, I never thought I would have problems putting weight on! I am still going to my weekly Tai Chi class and loving it.
12 months – 1 year on
1 year on I feel well, and finally can do the hoovering, the one thing that has been the most difficult to do, due to all the side bending. Who would have thought it, celebrating being able to hoover!
I can now lie on my left side for 1/2 hour but wouldn’t think about going to sleep on that side.
14 months – Cycling
I don’t just feel well, but better than I have done in years.
I am taking a super multi vitamin, calcium and magnesium, cod liver oil and a probiotic.
I have started cycling and am now training for a 54 mile cycle ride from London to Brighton to raise money for Pancreatic Cancer Action.
My weight is now a stable 128lb, it has taken 14 months to go from 120 to 128lbs.
20 months – Charity Cycle
I have spent 4 months of the Summer cycling, and have gone from couch to 54 miles.
In the process I have cycled just over 1,000 miles – and have never felt better. In a way I am shocked to have found a new sport that I love and one that has enabled my health to go from strength to strength. But to be honest it was the fact that I had signed up to undertake a charity ride that kept me motivated and focused. And as more people sponsored me I knew that there was no option but to complete the journey. In the end I raised over £2,600 for Pancreatic Cancer Action and found a new passion in my life.