An anxious wait . . . is now back on again

Hi everyone,

Just a quick update, straight from the horses mouth, so to speak!

The specialist liver nurse has just rung to say that my latest MRI scan results have shown no new tumours!!!  

Still the original three little blighters!

One of three has remained the same size, but the other two have slightly increased in size.

Next step is to have a PET scan (will need to look this up on here!) thought the nurse did explain it was like a CT scan only with glucose - I'm guessing to highlight markers elsewhere in the body?

If this scan is ok, liver resection and stoma reversal is next on the cards!

No timescales yet, but I'm wearing a smile as big as the sun today!

Thank you everyone for all your supportive messages during my 'anxious wait'

Love to you all, Jo xx

Parents
  • Thank you everyone for your kind messages and sharing in my good tidings!

    Beaker, Kathryn, Deb and Max, thank you all for your informative messages about the PET scan - I have visions of looking like the Ready-Brek advert after the scan, with a 'glow' all around the outline of my body. You may be too young to know what I'm wittering on about!

    As I work in a school, I'm wondering if I'll need to have a bit of time off after the scan so that the children won't be affected - no doubt the medical team will advise.

    Deb, the CRUK site mentioned that sometimes these scans are done in hospital car parks! I understand too, that some hospitals don't have PET facilities and an out of town trip is necessary, but I'm lucky that one of the hospitals where I have my treatment, does them. It is organised by an outside agency apparently. I'll take a warm cardi just in case!

    Brian, Hope and Nicola, thanks for your continued messages of support too! I'm loving the ideas for celebration - maybe I'll take your advice, Hope, and do all those lovely things!

    Nicola, thanks for your other message too - I'm such a computer dinosaur, I hadn't realised I could have just edited the title of that thread instead of starting a new one!

    Max, I smiled too when I got the 'phone call! You're right about what constitutes 'good news' for us these days!

    Will keep you all posted, but in the meantime, there's a left over Easter egg that seems to have my name on it!

    Phase 1 of the celebrations, Hope!

    Love to everyone, Jo xx

Reply
  • Thank you everyone for your kind messages and sharing in my good tidings!

    Beaker, Kathryn, Deb and Max, thank you all for your informative messages about the PET scan - I have visions of looking like the Ready-Brek advert after the scan, with a 'glow' all around the outline of my body. You may be too young to know what I'm wittering on about!

    As I work in a school, I'm wondering if I'll need to have a bit of time off after the scan so that the children won't be affected - no doubt the medical team will advise.

    Deb, the CRUK site mentioned that sometimes these scans are done in hospital car parks! I understand too, that some hospitals don't have PET facilities and an out of town trip is necessary, but I'm lucky that one of the hospitals where I have my treatment, does them. It is organised by an outside agency apparently. I'll take a warm cardi just in case!

    Brian, Hope and Nicola, thanks for your continued messages of support too! I'm loving the ideas for celebration - maybe I'll take your advice, Hope, and do all those lovely things!

    Nicola, thanks for your other message too - I'm such a computer dinosaur, I hadn't realised I could have just edited the title of that thread instead of starting a new one!

    Max, I smiled too when I got the 'phone call! You're right about what constitutes 'good news' for us these days!

    Will keep you all posted, but in the meantime, there's a left over Easter egg that seems to have my name on it!

    Phase 1 of the celebrations, Hope!

    Love to everyone, Jo xx

Children
  • Hi Jo

    Many congratulations on the good news.  Keep smiling.

    When I was due a PET scan they told me that I should keep away from babies for about 4 hours after the scan.  Mine was booked for 5pm one day and I was told I would be fine to go to work next day.  Did not actually get the scan as I was admitted two days before scan was due.

    Do let us know how you get on.

    Best wishes.

    Gill

  • Hi Jo

    So sorry for the late post - really must browse more!!  What great news for you and all your family.  Like the idea of an Easter Egg being phase 1 of your celebrations (have to say felt 'naughty' when I ate mine but it was very yummy.  Now each day begins with the thought 'got to be good today' or my doc will give my ears a bashing when I have my next blood test and the colesterol levels have gone up again.  Love to read uplifting news from forum buddies.  Look forward to reading about phase 2 of celebrations as and when.

    o.m.g hubby just woken and is watching 20/20 cricket and who should be sponsoring one of the teams but the company I work for - just cannot escape them even on a non work day-grrr. Currently our meal times are out of sync - he is having breakfast as I need lunch - maybe I just need to change my food round to fit it ha ha.

    Wishing you a great weekend - keep those grins coming.  Hugs  Jules x

  • Hi Gill,

    Thanks for your message!

    Depending on the timing of my scan, I suppose I'l lhave to wait and see if I can wangle a morning or afternoon off work! (as if I haven't had enough time off!)

    Joking apart though, I've read on the CRUK site that I may need to starve for 4 to 6 hours before the scan (presumably to clear the system of sugars?)

    I'm not sure I'd manage a morning in work on 'low fuel' especially as the staff room table always seems to have naughty treats on it!

    I follow your threads / posts and it's great to read about you meeting up with Lisa. She sounds a very bubbly and fun girl through her posts.

    Am I right in thinking you're nearing the end of your chemo? You seem to have coped really well with it. It's great when the finishing line appears on the horizon isn't it? I became a bit 'calendar obsessive' during my treatments, especially during Radiotherapy - constantly counting down the sessions left!

    Well, we're having a lie in with the papers - the new puppy is noticable by his absence, so I'd better go and investigate - or send my partner. As the saying goes, "Why have a dog and bark yourself?"

    Enjoy the rest of the weekend, hugs to you, Jo xx

  • Hi Jules,

    Thank you for your message - and an apology is not necessary at all! You're a busy lady and I always feel guilty when I read your thread/posts and don't respond! I still love reading them though!

    Well, Phase 2 of the celebrations was to take my friend out for a Birthday lunch. We had a lovely lunch and catch up and I was able to tell her my latest news. She confessed to 'hardly dare asking' and was obviously thrilled to hear the update.

    20/20 cricket eh? And as you say, what a downer seeing the company you work for, sponsoring a team! Sometimes there seems to be no escape from work!

    Glad you enjoyed your Easter egg! Chocolate seems more enjoyable when someone else has bought it for you! I've never been a massive chocolate fan (something my female colleagues and friends find amazing!) I've always had more of a savoury tooth!  Since having my ileostomy, even small amounts of chocolate have 'an effect' (I'll keep it vague, but hope you get my drift!)

    You mentioned cholesterol levels - I had to laugh when I received a text from my GP surgery inviting me to a routine Health Check (including cholesterol test) According to their website, it's offered to "all patients between the ages of 40 and 74 years who has not been diagnosed with a chronic, long-term condition"

    I have asthma and cancer but obviously still qualify to be called for a health check. Maybe I'm missing something? Maybe cancer and asthma aren't classified as chronic conditions - any thoughts?

    Well Jues, I hope the rest of your weekend is enjoyable - Farmers' Market today?

    It's grey and damp here in South Yorkshire, so my plans only include taking my daughter to do her food shopping and getting the puppy some more food! He's allowed out for walks next week, so then the exercise regime begins! (For my partner, not me! I'm already built like a racing snake - so is he, but one who has swallowed something large! Hehe.) I know I'm a meany, but this was one of the reasons for getting a dog! And he himself acknowledges his ample girth! He's hoping to have a bikini body by the summer!

    Well, now I've completely put you off your Sunday roast, I'll sign off and go and get ready for the shopping spree!

    Have a good week ahead too, much love, Jo xx

  • Hi Jo

    I always used to feel guilty about taking time off work for appointments but that changed with my first visit to the doctor when he ordered blood tests and chest x-ray.  It was also simplifed as I finished work at lunchtime on 14 jan to go and see consultant to discuss a drug trial they wanted me to sign up for .   Expected to go back to work in the afternoon but because my neck was very painful I got admitted that day.  Work have been very good and told me to take as long as I need before going back.

    Have to say I cannot remember them saying not to eat or drink for 4-6 hours before the PET but they might well have done given that you can only drking clear fluids for four hours before a CT Scan.

    Last full chemo is on Tuesday.  A week after I go back for a top-up of the trial drug and I have two further infusions of Rituximab at three week intervals then I am done.  Well apart from a CT Scan (a doddle) and a bone marrow trephine.  Not looking forward to this at all.  Had one done at the start.  The wipe the skin with what they say is a local anaesthetic but before it chans chance to do anything they then put a large needle in which then they proceed to push very hard until they go through the bone until they get to the bone marrow.  Not nice at all.  They want to do this again as the first time it showed a low grade lymphoma in about 10% of my bone marrow.  Want to check and see what if anything has happened since chemo.  Consultant said he does not think anything much will have changed as it usually spreads very very slowly.  I said does that mean something else will kill me first and he said yes it probably would.

    I am planning to go back to work part time on 02 June which will be about 5 weeks after my final full chemo.  Was told I could go back to work when still having the two infusions as this is more immunotherapy than chemotherapy.  Have tried to do something each day to try and work back up to a level where I can actualy cope with working again but have been getting very tired.   Went to bed at just after 9pm last night and did not wake until 6.45am.  This was a surprise as usually the cat wakes me up at about 6am or sometimes at 5am!  When it is 5am the cat gets shoved off thebed with a "get lost".  She then waints until about 6am to jump on me again.

    Hope you have a good weekend.

    Gill

  • Please do not feel guilty Jo - you have more than enough going on in your life too.  Bet the puppy is keeping you smiling..A woman where I work has a border collie rescue pup (having lost her previous dog aged 14!) and she is thoroughly enjoying the new challenges it is bringing.  Of course its quite a lot of work (she also has a Jack Russell and a rabbit!!) but she shares the 'walkies' with her husband.

    Glad you and your friend enjoyed the birthday lunch (great excuse for not having to cook too) and can fully understand her hesitation re asking questions.  Even thoughI am going through my hubby's journey with him (learning as I go!!) I still find it a little hard to talk to a close friend who also has a terminal diagnosis as you get worried that you could intrude or upset them.  Am learning to be guided by them and the family and try and text regularly (she cannot always talk on the phone).  Am waiting to hear back from her as to next 'gossip session'.

    By the way fully understood your ileostomy comment.  My brother in law's wife has a genetic illness similar to  Chrohns(sp)? and had this procedure.  She pays dearly for 'enjoying' the wrong kind of foods from time to time (she loves indian food and fruit cake) but says its worth it at the time!!

    Well just been summoned to make coffee so will just wish you a peaceful evening (if the puppy sleeps!!) and hope your partner benefits from the exercise (though trying not to think of a 'mankini').  Take care and sending hugs.  Jules x

  • Hi Gill,

    It's great that you have such understanding employers. On top of everything we go through, having work stress is something we can well do without. Not everyone is so lucky! I work in education so I know I'm extremely lucky!

    I presume you'll have some sort of a phased return in June? Even going back part time, you need to build up your work stamina. When I first went back,  I was a bit gung ho, thinking I was 'stronger' than I was. Thankfully, my boss extended my phased return (I also have the added bonus of regular half term holidays!) Back again tomorrow after a lovely two week break!

    The bone marrow trephine sounds extremely painful - poor you   How long does it take to recover from that invasive procedure? I'm normally not a very squeamish person, but your description made me wince.

    One of my cats wakes me up early too! A massive ginger Tom, jumps up alongside me and gently bunts me! He's always hungry, but I use your technique too and he tends to disappear for a while. What's the betting he doesn't do it in the morning when I have to get up!!!

    Well, it's time to start getting ready for bed - I'm sure I go to bed earlier than some of the children I teach!!

    Have a good week,

    Hugs Jo xx

  • Hi Jules,

    We're both busy tonight! I see you and I both replied on another thread earlier this evening. Great minds and all that!

    Yes, Paddy is making me smile. He's very energetic though! Can't wait for walkies to start!

    Ah, curry and fruit cake! I know exactly what your brother-in-law's wife means! I tempt fate these days and push the  dietary boundaries, but I do consider what I'm doing the next day! As I'm back to school tomorrow, it's back on the bland diet with no chocolate, spicy food or fizzy drinks! well, at least until the weekend!

    Well, it's fast approaching my bedtime! Sad that I'm heading off to bed before some of the youngsters I know!

    Have a good week, Jules. Having watched Country File, I'm not hopeful for a sunny one! Certainly not Mankini weather!

    Love and hugs, Jo xx

  • Morning Jo

    Like you had noticed the other thread (was 'just reading' because hubby watching 'Bond' on the tv and I was in danger of dropping off and then would not sleep at night time).  Hope the 'poster' can get some answers today.  As to you going to bed early, it gives the body recovery time before having to face those 'youngsters' who could possibly benefit  from doing the same thing.  Sadly does not work for me as I just wake even earlier.  These days I seem to manage on around 6hrs on a good night but  usually up a couple of times - very frustrating (age related hot/night flushes grrrr).   The plus side is that I can do 'quiet' housework before going to work (because after 6hrs on my feet I dont want to do it when I get in!!).

    Hope you have a good week but by the sound of it we will be wrapping up rather than 'stripping off' towards next weekend.  Very envious of my son who is off to Spain next weekend on a diving holiday - would like to feel the sun on my skin.  Take care, sending hugs  Jules x

  • Hi Jo

    The bone marrow only takes a few days to recover from.  With me I was back at work next day and had a sore lower back for about three days.  Mind you when I get really tired now my lower back starts aching sometimes.  It was a bit of a surprise as consultant said it would be taken from my thigh but when I saw the actual doctor who does them he said it woould be taken from the pelvic bone in the lower back.  Apparently they have not take from the thigh for some time.

    Jess tends to bunt me until I either shover her off and get up.  They certainly know how to get what they want.

    You will probably find that some of the little darlings you teach could do with going to bed at the same time as you.  One of my work colleagues is always complaining that her two chldren are far later going to bed than they should be.  Have pointed out that she sould set a bedtime and stick to it no matter how much they moan. At least then she would not have such a fight on her hands in the morning to get them up in time.

    Best wishes and good luck with the teaching.

    Gill