The bucket list subtraction equation.

I am happy to report that at the age of 49, and 6 months post Whipple that I passed my driving test. YAHOO!

My thoughts are with anyone that is struggling right now and hope things get as good for you as they have for me.

Advertisements

23 thoughts on “The bucket list subtraction equation.

  1. Hi Neil

    Brilliant!, the freedom of the open road, well done.
    Good to hear that you’re well on the right side of recovery. I’m 7 weeks post Whipple now, eating better than I thought, something weird about it though, tastes seem to linger. I’m sure I would be much further on if the surgeon had not opened up half of my wound before I was discharged. I’m now attached to a vacuum pump to heal it again, this system does have very impressive healing qualities though.
    Do you still have any discomfort and did your belly remain swollen for long? Is there any food that causes problems, I don’t seem to do well with bread. Do you still have numbness around your wound?
    It still all feels unreal and I can’t quite believe there are bits of me missing (I’d only lost a tooth before this), strange experience!
    You were right about the morphine!! They gave me antipsychotics (not needed in my opinion)!
    Take care
    Maggie

    • Ouch clumsy surgeons! Glad you are doing OK. My stomach remained swollen around the scar for a few weeks and the numbness for months. All normal. Bread doesn’t really bother me but the bigger the holes the better the bread, as they say. Dry type like baguettes seems OK.

      • Can I ask any aches like flu type of ache?? My husband 3 months post surgery and aching alot… On creon and trying to get used to how much to take with what food, his wound numb too His whipples procedure was for non cancerous ipmns…

      • Hi there.
        It seems that backache is a common issue but I am not sure about other aches.If he is in pain then see the doc, because that is not normal.
        However, 3 months is still early days and things will get better. The numbness in the scar will also dissipate.
        The Creon is a voyage of discovery I am afraid, I find that 1 40K table per meal will keep me on the straight and narrow. I use more if I have a particularly heavy meal or dessert.
        If you are on facebook then you can get some good advice here https://www.facebook.com/groups/250497878309541/ on the Whipple Surgery Survivor Group. Gives you some perspective too πŸ™‚
        also here http://whipplewarriors.org/

        Wishing you both all the best.

      • Cheers.. For that.. He’s not in pain but thought would be feeling something like.. Think.the toilet side frustrating him too… He’s waiting on a call back from.his clinical nurse specialist… How long before you felt something like again???

      • From my blog – Day Nine
        “Physically, I feel fine. It’s just the digestive system that keeps letting me down. I spoke to the consultants assistant on Friday about this and we agreed that I should try Creon tablets to help stabilise things. I can possibly wean off them in a few months.”
        This remains true, I get the odd bad day or two if I don’t watch what I eat. My blood sugars are the hardest thing I have to deal with daily I suppose. Getting back to work full time was very helpful too, although I don’t have a manual job I think the routine helps.
        I didn’t manage to wean off Creon. If we go out anywhere I’m like “Where’s my Creon (Panic Panic)” πŸ™‚

  2. Hi there, not done this for over a year now!!, hope I reply properly?
    Good to see you’re ok Neil.
    Steph, I wish your husband could know that he will feel absolutely fine soon. It is a bit up and down for a few months (the first three or four are the most difficult, with the benefit of hindsight, but not unbearable), creon is the answer, I think, I was a bit complacent about it for a while, I increased the dose after I was advised that you can’t really take too much. I got some smaller tablets for snacks and can eat anything now (lots of it unfortunately). I have made mistakes, work trip to London leaving tablets at home ) I know have small containers everywhere. I feel absolutely fine and have done for ages now, he will be fine, it will just settle down and he will realise that he feels normal again, maybe a little while yet, it’s a big op!?
    Wish him well, Neil’s blog was invaluable and very much appreciated.
    Maggie x

    • Many thanks Maggie… Appreciate your reply. Glad you ok. Is the aching all part and parcel of the procedure then??? with regards to have stomach ache etc…and toilet issues, we wondering if maybe he having too big a meals… Like Neil said creon is trial and error… If i or my hubby needs more advice can I contact you again??? He seems to be struggling to find the right advice and help..
      Many thanks… Well done on driving test xx..

      • It’s hard to remember all the details now, but I don’t think I had flu like aches?, get him to check with gp. I thought I felt ok, but judging by how I feel now, I think I probably felt rough a lot of the time. Eating didn’t settle down for a good few months, more than six probably, people reckon 12 months to feel normal, and that was about right. Don’t let him be disheartened though, he will feel fine way before then, it’s just that he will feel more normal all the time instead of having a few upsets. My numbness has stayed the same since day one, told it will stay now, weird, but normal for me now!! I sometimes think its harder for other people, I felt I was gradually managing and working it out, other people worried about me , apparently!! He’ll feel better when he doesn’t have to think about it all the time. Does he take pain relief still, that can make you feel rough, I was lucky and didn’t need much after leaving hospital. Are you in the uk? 40,000 creon for a small meal, double for a big one with pudding (one at the beginning and another before pudding, 25,000 with snacks, biscuits, crisps etc, that works for me (only quite recently though). I have started taking fat soluble vitamins, they seem good, not sure if I’m deficient, but started getting bad cramp and bruising easily and that’s better now. Living and learning!! It’s easy to get a bit obsessed with it all at the beginning, it’s nice to realise how much I’ve forgotten until talking about it now.
        Hope this helps, don’t rely too much on the Internet, be picky about the information you take on board, some of it can be a bit alarming, thank goodness were not dealing with cancer ontop of recovery.
        Onward and upward
        Maggie xx

      • Thanks.. He’s waiting for a call back from his clinical nurse specialist about the aches.. He does a manual job and getting very frustrated being off work..(.especially as he was such a fit man…running every week.. he’s only 42yrs old too)….However they have said he can work in office.. Which I think /hope will help…yes we in UK…(south Yorkshire)… Are you? Sorry to ask hope you not eating.. Did the toilet side of the recovery get better or just depend on what you eat??? Think he’ll have to lesson the potion sizes too.
        I think what you have said helps no end…think he was beginning to wonder if all in his head…. Sorry to be a pain nagging you xxx.

      • Please don’t feel that you’re “nagging”, happy to help, it’s sometimes good to compare notes. If he can manage a large meal, take more creon, it really does make a difference. I just went along with my appetite, not always good for a while, but too good now. Not really sure what’s normal toilet wise, never got caught short, but I think in the first few months it was a good indicator of what was digest able. I did have a phase of only eating one meal as I felt sick, salad was bad, cheese was fine for some reason. I needed really strong tasting food aswell, brown sauce on everything and then lime pickle!! That’s passed now. How much creon does he take? Sour sweets were good, things can taste a bit funny for a while, leaving a sweet aftertaste.
        I’m in Chester. Op in Liverpool royal.
        I think our bodies took a bit of a battering and it takes time to adjust, it is really early days, but it really does get better and he will feel more in control of things soon. I wouldn’t have been able to do a manual job for a long while, but if he’s normally fit there’s no reason for him not to be the same again. I was off work for 6 months and then went back part time for a month or so. You can tell when you’re ready to go back when you start enjoying being off!!, then you’re back to the grind before you know it!!

      • He’s taking 2 x 40,000 with main meals..
        Sometimes an extra 25000 if a bigger meal.and 25000 with snacks..
        Plus Omeprazole and multi vitamins… No pain killers .your information has been a big help… I’m sure if we need more information I’ll get in touch.. I’ll keep you informed on the aches… We got a holiday to look forward to soon.
        We are in Sheffield.. Most websites seem to be American… Glad to speak to a local ish person who had same surgery… Once again thanks xxxx

      • Hi…hope you remember me….and that you are doing ok….
        My reason for emailing you is. My husband is!! doing ok overall, however the last few weeks his stomach has been playing up, by that I mean churning and gurgling.
        he is also saying that his poo has changed mostly slightly runny… (gosh I’m sorry hope you not squeamish)…
        He’s got an appointment with his GP next week, but to be honest the doc just says ‘its normal your body been through a lot’… Which is correct but as my husband says he’s knows his body… He’s 8 mths post op… I was wondering if you felt any of this…. It’s very difficult to find someone who been through the same op for non cancer….

        Cheers

        Steph x

      • Hi Steph, Glad to hear your husband is generally fine.
        Me squeamish, never, have you read my earlier blog entries πŸ˜‰
        Obviously my advice isn’t professional and I am not a doctor, just a bloke who had an operation. It sounds to me like your husband is either not getting enough Creon or has an excess of bile. Does he take any tablets to control acid levels such as Omeparazole or Losec?
        I would suggest keeping a food diary and then he can say “when I eat this, this happens to me”. Go back to basics with his diet, remove the beer, dairy products, pizza, curries etc and keep it simple.
        Try the BRAT Diet for a day or two. http://en.wikipedia.org/wiki/BRAT_diet

        Oh and change your doctor! Ring the consultant or their assistant, they should be giving you dietary advice as well as general advice too.

        Keep us posted and good luck.

      • Hi steph and Neil

        We’re operating on depleted digestive systems, bits were removed that we needed for normality to continue! We don’t have a gall bladder now and that plays a big part in digestion, especially fat. I read loads about this op and the common theme was getting used to “the new normal”, lots of advice to eat small meals more often. I have not always heeded that advice and suffered the consequences on many occasion. Digestive meltdown always follows large meals and too much alcohol. I haven’t refined it to pinpoint more specific culprits, I suspect very fatty food isn’t good (don’t avoid it though), I’ve always rejected advice from the food police (which may have got me into this pickle in the first place!?), but I think our bodies can’t cope with the same things anymore. We are now high risk of diabetes and need to be really careful. I don’t practice what I preach, but digestive upsets act as a reminder that this really is the new normal and can be managed with some changes. It does take time though and is a worry when you don’t feel right and the GP doesn’t seem to understand (they may not have come across it before?)
        The BRAT diet does settle things down if it’s really bad, ask for a referral to a dietician, speak to the specialists, small meals more often.
        In answer to your question!, it is a normal reaction to a damaged digestive system trying to cope and it needs to be given a rest.
        Good advice from Neil about the diary, there must be things that we can’t digest well, after a year and a half I’ve only come up with raw onion as a definite and alcohol (the odd beer is worth a chance, but it’s not really worth bothering without facing the consequences)
        He will be fine, it takes me ages to learn from my mistakes and I still make choices to hang the consequences, but I am going to make an effort to make more healthier choices (much as I hate all that waffle!). Mmm waffles

        Take care and keep in touch x

      • Cheers Neil and Maggie…. Jonathan has phoned the hospital…he is due an follow up next month anyhow so they said they’ll get the dietician to come to appointment.. Not tried your diet… But will if no change.. However it may sound odd but ever since he started a new bottle of creon things started to go down hill…. So he’s started a new pack… Can you get a bad batch of creon!!!!! it’s horrible some times as he’s such a worrier and when things aren’t right he’s constantly wondering if he’s ill again…. he started back gentle jogging last month as he was feeling so much better…. It’s like 2 steps……. He’s lost a little weight too….. Xx

    • Hi Maggie/Neil…. My husband doing well..back at work in office not manual job as he wouldn’t be able to do that yet…. Work have been great with him…anyhow I just wanted to ask about alcohol. Did either of you drink?? My husband likes a drink occasionally but when had a couple of beers he says he gets stomach ache which then sometimes gives him loose stools…is this normal?? Will it settle???

      • Hi steph

        I’ve not had a drink since last march due to “deranged liver function test”?, never been a big drinker anyway. Maybe the gas in the beer? Not sure if you have to take creon with beer, probably do? Not much help really!! I do remember certain foods being more difficult to digest than others, I can’t really say that everything is always normal now (can’t remember normal), I think I’m just used to it,it doesn’t really affect my daily life much), if he’s having problems that are difficult to manage maybe see a dietician, he has still got a fair way to go yet, it will settle down loads more yet. If I had gone back to work so soon I may have noticed more difficulties, didn’t go back for 6 months. I’m hoping ill be ok to have some beers at Christmas, as an experiment on your husbands behalf!!
        Some people say they develop an intolerance to wheat or dairy afterwards?
        I’m sure it’s all normal, under the circumstances
        Maggiex

      • Glad to hear it.
        I was never a big drinker before, now I like to chill at the weekend with a couple of cans. Weird.
        Too many though and you have to pay the piper. As your hubby has discovered.
        All things in moderation as they say. Don’t overdo it and the pancreas can cope, get it drunk and it can’t, simples πŸ™‚

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s