Newbie Diagnosis Rollercoaster

[Minstrel1]

Thank you Didge. I must admit surgeon was really good last night explaining pros and cons. He also encouraged my husband to express his opinion which I thought was good as obviously the choices I make effect the whole family.

[Go green sue]

Hi Lisa, I have just seen your post. I completely agree with you making the decision to have surgery.

They found a ipmn which is a cystic tumour in the body of my pancreas 3 years ago they monitored it yearly with MRI scans but I always had that seed of doubt in my mind. Last August it had grown so it was decided to remove my distal pancreas. The surgery wasn't as bad as expected - even though I developed an abscess .

I made a good recovery- although I still have some niggly problems and still being monitored. In fact I have just been on a cruise to Dubai free from worrying about having cancer.

I can understand how you feel but for the sake of a few uncomfortable weeks you will have peace of mind

Let us know how it goes

Love Sue H

[Minstrel1]

Thank u Sue. Glad u r ok now. I feel this is the right choice for me also. Especially because of the diagnostic uncertainty. I had been feeling physically better over the last couple of weeks. However my stomach troubles have decided to make a return over the last few days. I must have tempted fate when I told the surgeon that this was much better! I am trying to help myself by getting fitter. I am swimming on a regular basis ( stomach usually settles early afternoon until I eat again in the evening). It does take a big effort to go and the first 5/10 minutes are really hard. But I usually manage to swim continuously for 35 minutes then have 5 minutes in the jacuzzi and then swim for a further 25 minutes. I'm lucky because pool is 10 minutes walk from my house and the water is warm. Lisa x

[Minstrel1]

Just been told unofficially that my surgery will be 6th Augest by surgeons secretary. Apparently surgeon calling me will make it official. Away on holiday on Friday for 2 week so will try and put everything to the back of my mind until we get back. Lisa x

[sandraW]

Hi Lisa,

That's the right thing to do, might not be so easy in practise though, but try your best and have a really lovely holiday, and come back all relaxed and ready. sandrax

Edited June 30, 2015 by sandraW

[Minstrel1]

Thanks Sandra, I am going with my husband and youngest son (16) so hopefully they will help to distract me! Lisa x

[Minstrel1]

Just a quick update. Had a relaxing break apart from call from surgeon mid holiday to say he was unable to get a scrub nurse for my surgery on 6th August. He said he would consider getting a scrub nurse from private hospital but wasn't keen on that idea as he usually brings a scrub nurse from nhs who he works with regularly. Anyway to cut a long story short rang surgeons secretary a few days later and my whipple surgery will be on 10th August. In a way this is better for me as it means I will be at home for my youngest sons birthday on 8th august. Lisa x

[allyc1]

hi Lisa

I see you are having the Whipples op, we are waiting to see if its an option for my dad as he is awaiting results to see if the cancer has shrunk enough to operate. I hope all goes well for you and keep us posted, Take care x

[Minstrel1]

My whipple surgery is now only 2 weeks away! Having my pre-op assessment this Thursday. The confirmation letter I got from the hospital stated expected stay will be 7 days. This cheered me up as I thought it would be longer. I know that I can't pin my hopes on this as the risk of complications has been discussed at length with me. But at least it gives me an idea of what they think my stay might be. I just want to get on with it now and start moving forward. Will post my progress. Have been keeping up to date with everyone's posts and my thoughts are with you all. Take care Lisa x

[kittycat]

Lisa, that's good news. Things are moving forward for you, good luck.

Sue

[Didge]

Great news. 7 days is a bit quick, 10 prob more realistic but you never know! X

[Minstrel1]

Thanks Didge. That's what I thought too, but fingers crossed hey! I have been following ur posts and my thoughts are with you and Rob. Lisa x

[sandraW]

Hi Lisa,

Trevor had tail of his pancreas and spleen removed, he was in just 7 days after his op, took him a couple of weeks but he made a marvellous recovery, he was out pottering in the garden after 4 weeks.

But as Didge rightly says better thinking of 10 days and getting out earlier, than the other way around, sure it will all go well, please keep us informed we will be thinking of you, take care sandrax

[Minstrel1]

Thanks Sandra

It is encouraging to hear that Trevor made such a good recovery from surgery. I am going to try and take each day as it comes and not become too fixated on a timescale but would like to think I can follow your Trevor's example in this. Lisa x

[Pete12]

Hi Lisa,

Just like to wish you all the best for your surgery on the 10th. I had a Whipple on 6th June 2014. Had a 4 week stay in hospital due to an infection but since then it has been onwards and upwards. I didn't have any post operative Chemo and my last scan in March gave the all clear. My appetite is better than ever, just need to take Creon with meals and I have put all my weight back on (and then some). It is all worthwhile.

Best thoughts

Pete

[Minstrel1]

Thanks Pete. It's reassuring to hear positive stories. Had pre-op assessment on Thursday and surgeon has booked me in to critical care (icu) for 3 days post op so is being cautious which is good to know. Will let folks know how I get on! Lisa x

[kittycat]

Good luck Lisa, I will be thinking of you.

Sue

[Minstrel1]

Hi sorry it's been a while. My surgery took place on 10th August. Just prior to surgery the surgeon told me that there may be a small chance that he may not have to perform the whip ole procedure but thought this unlikely. I came around in intensive care and was told that the surgeon had managed to 'peel' my tumour from the head of my pancreas and had not proceeded with the full whipple. I am still unsure as to how I feel about this as the surgeon had previously said that one of the main dangers of this is that he may have to operate again if cancer is found. But on the other hand I will be mightily grateful if no further action needs to be taken. I ended up spending 5 days in intensive care with 2 nurses looking after me 24/7 as I developed sepsis from a UTI infection and also developed a chest infection. I was put on very strong antibiotics, was on continuous oxygen for 6 days. I felt very toxic for a lot of the time as they were pumping lots of different drugs in to me. However I now feel I am starting to emerge from the haze of drugs. I have been home 2days and am now just on painkillers and daily heparin injection. I am still sleeping much of the day (but less than I was). I am due to have my staples removed tomorrow (wound goes from just under one side of my rib cage to the other). I am next due to meet with my surgeon in 3 weeks to discuss results. When I asked him his opinion when I was in hospital he appeared to avoid the answer (but maybe that's just my paranoia kicking in). Hopefully I have done with the worst and it will be onwards and upwards from now on. I must say that even though I was in intensive care for 5 days with all sorts of stuff going on - I was made to feel very safe and cared for. I was fortunate to be the only patient during my stay. Will let u know when I have more news. Lisax

[Minstrel1]

What a difference a week makes! I am now starting to get back to my old self. Have been able to ditch the stronger painkillers in favour of good old paracetamol. I am getting out of the house everyday for short walks around where I live. Main issues at moment are either feeling very chilled or to the other extent cold sweats after any type of gentle effort and also after eating and taking paracetamol! Still feel worn out quickly but that is to be expected. Bowel remains unsettled but am used to that!! Am feeling positive that recovery from op is moving in the right direction but am still anxious about seeing surgeon on 7th September. Lisa x

[allyc1]

You are amazing.You sound like you have recovered so well in such a short time. Fingers crossed for your results in September x

[Minstrel1]

Thanks. I think the people around me, especially my husband have been amazing. My husband was with me continuously the first 2 weeks. He has been working from home as much as he can this week. He has had to go way out of his comfort zone giving me my injections (heparin) which I know he hates doing. He motivates me to do a little more each day ( he took what the physio said to heart). And goes on walks with me when he can, my sons have also been keeping me company. My daughter is on holiday at the moment but has been keen to give positive feedback on things I haven't even noticed myself. All in all I count myself to be very fortunate to have the love and support I have which is surely helping in my recovery. Lisa x

[ronanronan]

I totally agree with Didge about that....nice reply!!!!

[Minstrel1]

Seen surgeon today. My tumour was benign. It was a lymphagianoma. Apparently this type of tumour is very rare in the pancreas and abdomen. Because of this surgeon wants to do a further scan in a couple of months time. My recovery is going well. I am gradually getting my strength back. Continue to experience back pain and my digestive system remains problematic/upset. Hopefully this will settle in time. Surgeon appeared very positive but keen to keep an eye on my progress. One of the complications I had after surgery due to my UTI was that my arms and hands swelled. My fingers on my left hand remain swelled and I am unable to make a fist or use left hand very well - so driving may be a little way off yet as surgeon thinks I will probably need physio. He has agreed that I can go back to swimming when I feel ready as wound has healed well. I would like to thank everyone for the support I have received since posting on this site. I wish everyone well who is awaiting diagnosis or battling with PC. I count myself as very fortunate (whilst not feeling totally out of the woods yet) to not be facing that fight. Take care my best wishes are with you all Lisa xx

[MSH]

That's great news, it must be a huge weight off your mind. I hope your recovery from surgery proceeds without further problems.

Mark

[Minstrel1]

Update: Saw surgeon last night for follow up appointment. He was pleased with progress. I still get many of the symptoms I was having prior to surgery (but not quite as intense). He has arranged for me to have a follow up CT scan in January and hopes that the next appointment with him will be my last. May need to see gastroenterologist again for other difficulties but going to wait a few more months to see if things settle down. Even though I went through a big op and have an equally big scar ( my skin doesn't heal well) I count myself as incredibly fortunate to not have to face what many of you are facing. Have been left with a little reminder though - I now have crps in the hand and am having physio for this as have limited movement of my fingers in my left hand.

Going back to work next week on a phased return. Have been going in for team meetings for last few weeks to ease myself back. My boss is being really supportive and is keen to be flexible and go at my pace, as my job is quite a stressful one!!!! Take care everyone Lisa xx