@Sisi I’m so sorry to hear your husband is having to go through more proceedures. What a rough few months you’ve had. I do wonder if the operation he had with medications and anaesthesia has upset his gut micro biome? Sounds like the medical professionals are right on it and hopefully on Tuesday you can move forward with it. I am thinking of you both and hopefully you get a chance to relax in the sun at some point. I can relate to the worry and anxiety you must be going through. Sending lots of best wishes x
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@Logsie Thank you so much for your kind words, they really help 
Yes, it’s been a crazy few months! Will keep you posted on any progress. Sending love & best wishes back to you & your husband 
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Hi @Sisi and all
Oh Sisi. I really feel for you and George. It’s all quite worrying for you but remember you can get positives on the FIT for many reasons and not all are as bad as you think they might be. I had the same experience recently with a (slightly) positive FIT and was also referred on the 2 week cancer pathway. 
Next step would be a colonoscopy -the prep for which is not very pleasant but it will at least give you answers. More waiting and worrying. So hard for you.
Meanwhile. is your husband still having those nasty symptoms? I really sympathise with him having had IBS for many years.
Thank goodness there are no more bank Holidays until Christmas as they don’t seem to be good for your husband.
Thinking of you. Xx
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@ChrissyD Thank you for your comforting words. Really very much appreciated 
His FIT came back with 177 high reading 
And I think I’ve accessed the results before the GP has 
He’s had weight loss too, which I thought was due post surgery but now I wonder? Fortunately he’s quite perky & up & about. I wondered if you may have experienced something similar, with your IBS Like you say, the next step is the colonoscopy, so they can work out what’s going on. Feel weirdly relieved that we’ve actually cancelled the holiday ( again! ) I think it would have been potentially too stressful, with the ‘what ifs’ & the potential if things got worse whilst away.
Do you mean the nasty visual symptoms he was having? If so, he occasionally gets them now. Apparently ( I think ) it’s the brain trying to recalibrate itself after the mini strokes.
Hope your health issues aren’t too bad at the moment & you’re getting some allotment time in? Lots of love 
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Oh @Sisi and @ChrissyD @Logsie @Lyndam Yes, weekends and bank hol’s certainly are not our friends medically and for you and George @Sisi it certainly is one thing after another at the moment, it would certainly make me permanently on edge emotionally, physically and practically.
For me it is also the not knowing and waiting. Also having results accessibly on line for the patient definitely is a double edged sword, they call it progress.
Perhaps cancelling your holiday is the one thing you have control of making a decision on @Sisi
Sending you all my best wishes xxx
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Thankyou dear @Erica for your kind words 
Yes, waiting & worrying is the worst isn’t it?!
We definitely feel better for cancelling the holiday. As you say, one thing that we can control. I hope all ok with you? Love & best wishes
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Hi @Sisi. So sorry to hear your husband is having more problems. What a year you are having, you will be glad when it is over. I hope things turn out okay and it’s just a blip. I am having problems with bloods at the moment, but that’s another issue. Sending best wishes. Lynda
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Hi @Lyndam what’s going on with your bloods, if you don’t mind me asking?
Thankyou dear @Lyndam It has been quite a year, you’re right! You couldn’t make it up really! Sorry to hear your bloods are misbehaving Always here if you need to chat. With much love
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@Erica I don’t mind you asking Erica. I had an annual blood test at my gp’s on the 7th August. The following day I looked at my file on line to make sure the bloods had not altered. The monocyte count had raised, haemoglobin lowered and platelets had dropped along with various other results. Then I noticed my gp had put a note on the results, abnormal but no further action. Given I was not due to see my haematologist until 23rd Nov I was not happy, so a few days later I rang my support nurse and asked her to just take a look at the results and confirm the hospital was happy with them. As I have access to my chart at the hospital they started to sending messages. They were not happy with them and sent me a blood pack to have them done again at the gp surgery. The blood pack when it arrived was marked as needing done urgent, but my gp could only offer me an appointment 11 days later. Advised the hospital of this and was asked if I could go there to have them done in 3 days, as it was the weekend. Then 10 minutes later I had a phone call from the hospital advising the haematologist had looked at the bloods and wanted another bone marrow biopsy done in 4 days time. So had to go there Monday and Tuesday last week. They have also brought my haematology appointment forward to the 8th Sept, so not at all happy with my gp as they should have flagged there result with the hospital. Sorry for the long reply Erica, hope you are doing okay. Lynda
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Oh, @Lyndam you must have been going through a lot emotionally and practically, perhaps it is a good thing for us to be able to access our results on line..
Please do let us know how you get on and look after yourself, again it is the not knowing isn’t it.
Hi @Sisi @Lyndam @Erica @Logsie
@Sisi I also think you were right to cancel your holiday as you wouldn’t have been able to relax knowing that you might be missing any urgent investigations. And if your husband was still having all the GI symptoms too it’s not nice when away from home (that’s what I was meaning in my post but sorry to hear about the visual disturbances too😢). Hope you’re not too out of pocket and the travel insurers aren’t quibbling!
@Lyndam - are your liver function tests still causing you concerns or is it the Chronic myelomonocytic leukaemia (CMML) blood counts which are changing? Whatever it is, I hope you can soon get some answers.
The harvest on the allotment is finally slowing down and 3 cheers for my lovely husband who bore the brunt of all the picking, watering and prepping for the freezer whilst I was struggling with the chest infection. I’m still not 100% but at least my appetite has returned, I’ve put a couple of pounds back on and I’m not having to have 2 naps in the day!! I was getting quite depressed by it tbh, plus all the worries about having to refuse the various endoscopies they were determined to undertake! I think my very enlarged spleen puts me at risk of a splenic rupture with a colonoscopy and the Dr was very much in agreement with that - thank goodness!
I think sometimes we all feel it’s “one darned thing after another”. The joys of getting older I guess?
Thinking of you all. Let us know how things are when you feel up to it @Sisi and @Lyndam
Xx
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Hi @Lyndam
I’m so sorry. I completely missed your post about the runaround you’ve had with your blood test results! Not good that your GP obviously did not recognise the subtle changes in your blood test results so it’s a good job you are very savvy about checking for yourself and knowing what isn’t normal for YOU! 
Hopefully, you’ve now got everything brought forward and you’ll soon be able to discuss the biopsy results with your consultant. MyChart is very useful isn’t it. They use it at Addenbrookes and it’s a zillion times more user-friendly than the system at my local hospital. Good for you for chasing everything.
Again sending good vibes to you.Take care. X
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@Lyndam Sorry to hear this. Not so good from your GP As @Erica has said, good that you’ve been on the case & have been proactive. Keep us posted & good luck for your appt on the 8th
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@ChrissyD Thankyou yes, his GI symptoms would have made him feel like he potentially needed access to a toilet all the time, not much fun when you’re abroad! Would definitely have been a real worry. Although we were looking forward to the train journey down to the south of France. Oh well. France will have to wait!
Fortunately not too out of pocket. Been able to get refunds on the train travel 
but apartment we won’t get back, as it’s only a week away we’d have been staying. I might be brave & call the travel insurance company & see if I can get something.
So glad to hear you’ve been feeling a bit more yourself. That chest infection sounded really nasty! 
Take care of yourself & will keep you posted. Lots of love
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@ChrissyD @Sisi @Erica thank you all for your good wishes, I will let you know how I get on on the 8th. As you said @ChrissyD Addenbrooks have a wonderful my chart to access. It saves logging test results as well as they have graphs showing results over time. Sorry to hear @Sisithat you have had to cancel your holiday. I am off to London for the weekend on the 6th with my family taking in a theatre trip to see Tina the musical, my 70th birthday treat. Then off to Devon at the end of September, so have a lot to look forward to. Take care all. Lynda
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Hi @Sisi
I know from having IBS the sheer panic of not being able to find a toilet when desperate, so your husband has been spared that anxiety. Your post brought back very unpleasant memories of toilets in France where we often had our family holidays! 
Admittedly it was 30 years ago but many of the public ones and even some in restaurants were quite literally holes in the floor with foot stands either side and often in a disgusting state -especially those by the beach! My young kids were quite horrified! Hopefully France has modernised! 
You really ought to see if you can get back something for your accommodation? Travel insurance should cover cancellation for medical reasons-especially as not linked to his pre-existing conditions? It’s all hassle though.
I’m on the Patient Participation Group for my GP practice and have recently been pursuing an issue on the. Online Patient record whereby normal test results are recorded as “Normal No further action. Patient informed” which would be fine except the patient isn’t informed! Apparently, GP practices do not have a legal duty to tell patients about normal results and that would clearly create a huge administrative burden but they certainly shouldn’t be putting incorrect information on the record! Unfortunately the IT systems used cannot be corrected locally as they are nationally bought-in systems! I’m learning a lot about some of the issues that GP practices have to deal with!
Hope you manage to enjoy today.
It’s my “baby” sister’s 70th birthday today and also brings back memories of my oldest child’s birth on August Bank Holiday Monday 1979 - not really Bank Holiday fun for me to be in labour for 15 hours - especially as he was unexpectedly 4 weeks early! He’s invited us round for home-made pizza today to celebrate!
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@Lyndam Thank you. I’m sitting outside on the patio at the moment…sunshine is lovely, could almost be in France! 
Sounds like you’ve got some lovely things to look forward to! I’ve heard great things about Tina the musical! Enjoy!
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@Sisi @ChrissyD @Lyndam @Erica @Erica @Logsie @Willow .
Hi Sisi and all. Wow seems a lot of us are having a worrying time. The last bank holiday before Christmas is living up to its dreadful reputation. My own health probs always pop up around bank holidays/weekends especially Christmas! Anyway I hope everyone starts improving. I myself have been going through a problem with bruises.My left foot suddenly broke out in massive bruises a bit like my recent sprained right foot but this time no injury or pain. I contacted the emergency help line and they said come to the triage clinic and we will do some tests. All the tests were o.k. platelets slightly higher monocytes slightly lower. Perhaps my shoes were causing the bruising? Ten days ago I found a strange large bruise on my forearm accompanied by a small lump! It cleared very quickly and the small lump also disappeared. Then another lump and strange bruise appeared near my wrist and elbow. Contacted the oncology triage and had another blood test which was quite good and monocytes lower platelets higher. I thought it was lymph nodes swelling and bleeding so my telephone appointment is now a face to face. I still feel well but my ankles have been swelling as the day goes by.
I have managed to start regular sessions on the exercise bike and my heel on left foot is slightly better. As blood tests are still stable I am not worried. My wife has had a cold for over a week sneezing as if she has hay fever which she doesn’t suffer from. I don’t seem to catch anything these days thank god! But the bruises and swollen ankles are a bit worrying. I always feel embarrassed discussing my minor problems when compared to the really tough times some are having. I really hope we all start improving somewhat and have just a little less to worry about. Surgical procedures are a worry in our situation. I had a appendicitis years before Chronic myelomonocytic leukaemia (CMML) arrived followed by a colonoscopy, everything went well and the procedure accompanied by some anesthetic wasn’t to bad, but of course I was well at the time no low platelets to cause concern! I wish everyone well stay positive and let’s get through these challenging times. This forum is such a great support. Once again best wishes to all Unclejack.
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@ChrissyD Oh my! French toilets!!! I have experienced many! My Mum is French, so we have spent a lot of Summers there over the years. I don’t think there is enough time in the day for me to chat about the state of French loos! Although one time in particular springs to mind when we were camping 
I was only 10 yrs old & very proud to show my older sister ( then 19 ) around the campsite, as she hadn’t been with us the previous year. When I showed her the toilets ( hole in the ground ) she burst into tears! 
Poor thing!
I will definitely contact the travel people in the week, thank you for the encouragement.
Happy Birthday to your baby sister! Enjoy your day together It sounds like you also have experience of being in hospital / needing medical help over a bank holiday! So please take care today! Labour for 15 hours?? Oh my!
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