Yep. That's me! Having got my strength more or less back after my life-threatening upper intestinal bleed last October I once again did a great family Christmas, with the same attitude I've had for the past few years i.e This'd better be good because it might be my last one. But as soon as the hoo-ha was over I contacted my Onc's secretary to ask for a scan prior to my routine 3 monthly meeting with him on 28th January. I was pretty sure something was afoot inside me, and decided to get ahead of the game, also getting a CA125 blood test via my GP, although this was gratifyingly raised only slightly from 280 to 390 - not in the thousands which I was expecting.
But three weeks ago I woke up yellow! Quite a nice mellow shade as it happens, which I convinced myself was a pleasing gold tinge and preferable to my normal very fair skin. My husband popped that balloom however, and told me I was actually a rather sickening shade of mustard! Not good. I decided to bypass my GP and spoke directly to the gastrologist who had treated me for the burst duodenal ulcer. I was told to get myself into hospital straight away. There followed an MRI scan,and a barium 'swallow' (which sounds awful but was a piece of cake). It turned out there was no obstruction in my digestive tract, but what the MRI scan showed was a mass wedged in between my liver and pancreas, which was blocking the bile duct hence the jaundice. I had to have a stent inserted to allow the build up of bile to drain directly into my intestine but once this was successfully achieved (a tricky business apparently) I immediately began to get better, although the jaundice had made me very itchy and aggravated my dormant eczema so my skin was a bit of a mess - sore and uncomfortable, but now improving as the jaundice finally clears completely.
But at this point I did not know if the cancer had migrated to my liver,or was maybe a new primary cancer so I expected the worst when I saw my Onc last Monday. But it appears to be 'just' another bit of ovarian cancer which has decided to play silly buggers and I am due to start my fifth course of chemo shortly - Caelyx this time, every 4 weeks over 6 months, the hope being that a completely new (to me) drug will prove more effective than the carbo/taxol I have had four times and which my body is no longer tolerating on a satisfactory level.
I am assured I wont lose my hair, but may be subject to mouth ulcers, a skin rash (wot I deffo do NOT need, thanks all the same) amd possibly nausea. I should be grateful for anyone's experience of Caelyx on the level that fore-warned is fore-armed.
Meanhwile it is now the countdown to my elder daughter's wedding on June 29th and I therefore have no time whatsoever to be in the slightest bit ill. I have a cake to make and decorate, wedding dress fittings to attend and a bedroom to completely redecorate so the bride has a lovely room to stay in the night before her big day. Also it is my son's 40th birthday in April and I want to make him a photograph album of his life from sweet little impish baby, followed by his 'Mowgli' phase when he was 3ish when he looked just like the lithe brown, mop-haired poppet from Disney's film, through the gap toothed school years, semi-bolshy teenage one, until 6th form when he looked like a young Tom Cruise but with long wavy dark hair. And here he is now, a grown family man of 40. Crumbs.
Also, having had one very serious health scare (burst ulcer) I have been busy finalising my affairs so that I have everything in place and can then file it away, forget about it and carry on with the business of living, although for now It's still a work in progress as it's all a bit long-winded and I have to feel in the right frame of mind to concentrate on doing it.
Memo to self. Just bloody well get it done girl, then it's one less thing to worry about.
Love to you all
Patsy x
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PatsyH
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Now I know why we haven't heard from you for some time. You never feel sorry for yourself so I'm packaging up a bit of sympathy and sending down the ether especially for you. You have been in the wars but you body and your mind are unstoppable bolshi fighters so you've come through it all. I have to say I'm very impressed at your excellent sense of timing in that you managed to provide a wonderful Christmas for your family sandwiched between very serious health scares and trips to the hospital.
I'll let other more experienced ladies advise you on Caelyx but wish you luck with that. Oncologists have a tendency to emphasise the down side of things so let's hope you're lucky and don't have too much in the way of side-effects.
You have a wonderful year ahead of you as mother-of-the-bride. Make sure you leave enough energy for yourself so you can savour every moment of the build-up to the event and the day itself. You don't mention a new outfit for yourself, perhaps a hat, beauty treatments and pampering. I hope these get factored into your wedding day plans.
When you described the photo album and sorting out your affairs I felt a great affinity with your mindset. These have been my priorities too. I've found it very satisfactory to have sorted out a lot of bits and bobs and have all the paperwork well indexed, organised and put away on the shelf out of sight and mind leaving me free to enjoy everything life offers.
Hi Patsy, I have been wondering, too, why we hadn't heard from you lately. Sorry you've been having such a horrible time.
As usual, Annie puts it in a really apposite way. I echo her words. You have so much to look forward to and so much living to do. Just give yourself a bit of time to get over these major happenings and then get on with kicking the b****rd into touch.
Love n hugs to you
Wendy xx
Hi Patsy,
You really have had a rough time recently and seem to have dealt with it much better than I would.
I ,too,have begun to compile photo albums for my husband ,son and daughter.My daughter is only 14 which makes the whole thing harder and I have had to take a break from it.
I need to become organised like Annie and sort out my paperwork as I think I would feel less stressed if it was in better order.
I hope the Caeylx works well for you and side effects are minimal.
What a horrendous time you have had and well done for coping with it so brilliantly.
Here's wishing you well and hoping you have a great time planning for your daughter's wedding.
Love Mary xx
Dear Patsy
Thank you for letting us know what's been going on with you. It sounds really tough. I hope the Caelix does the job and that you have a wonderful time during this special year. I take my hat off to your matter -of-fact attitude and indomitable spirit.
Love and best wishes
Linda
Hi Patsy,
You have nothing but my admiration for coping so well, I am so sorry for what you are going through, but you write so entertaining, that it is hard not to have a little giggle, thank you for such an entertaining blog, and even though your news is not good I feel in a way you've cheered us all up today.... Love and best wishes x G x
Snap... My Son is 40 in July and I have done an album through photo box for him. Really pleased with the end result now doing one for my soon to be 18 year old grand daughter.
Caelyx... I had this treatment with carbo last year. I had carbo/taxol previously but the effects on hands and feet meant no more.
It does affect your mouth and skin. I got a prescription from dentist for difflam spray which was very effective. Also get the hospital to prescribe an em
sorry hit wrong button. All fingers and thumbs. I meant to say prescribe an emolient (think that's the right word) cream and use religiously after cool not hot showers. Those were the only side effects I had and I was treatment free for a further 12 months.
Just wanted to wish all the best with this new course of treatment. Im sure with an attitude like yours you will kiss ass..
Lots of love
suzanne. xxx
Dear Patsy,
what a long haul, but you are managing it brilliantly. I did smile while reading it.
You will find the preparations for the wedding very good at taking your mind off things.
My daughter got married June 23rd last year only 10wks after my diagnosis and I was completely focused on the wedding. I had already bought my outfit and had lost 3 1/2 stone with a view that it would be altered. Then I realized that it wasn't going to fit me as I had a
spread around the middle. I agree with Annie about the pampering, I had the full works and felt better for it. I also lay down for a couple of hours between the reception and the evening party, made easier as we were staying in the hotel where the celebrations were taking place.
Wishing you lots of best wishes, you have appear to be of strong character and that will stand you in good stead.
Blogs like yours should be worrying and sad but you are so positive and it made me smile which was good, as you sound like you smile a lot and don't let your condition get I the way of life. At the end of the day we know more about what is going on with our bodies than most people and it is great to kick OCs butt and not let it get in the way of enjoying life. Enjoy all the preparations for your daughters wedding, I love weddings and I am sure you will be a fabulous MoB.
Its always lovely to hear from you Patsy as above all you remind us that having a good attitude is at least half the battle. You inspire me to have a more ‘up yours’ attitude to my own cancer and that even when things get tough, we are able to overcome these setbacks and ‘look back and laugh’.
I had 6 rounds of Caelyx which finished 3 years ago and stablised my disease. The cancer is growing very slowly but I’m still pretty much normal and symptom free so I guess we can say it was a good result.
As for the symptoms, by 3 months in I had developed quite severe symptoms to the point that it was suggested they reduce the dose and I said ‘don’t you dare , I want it full strength!’ I just had very sore feet, hands and lots of mouth ulcers. I was given the difflam mouth rinse and I probably should have used this as a preventative measure. I would also recommend keeping hands and feet well moisturised (an excuse to pamper oneself). I didn’t lose my hair but I think it thinned a bit and I lost a lot of body hair. I had my eyebrows waxed 2 months in and did not need to redo them till treatment finished.
I had a family wedding to attend after my 3rd chemo and they arranged it so the appointment I would have had on the Friday before the wedding was moved to the Monday after, so that I could enjoy the wedding feeling as good as possible. I had a wonderful time at the wedding and I am sure that nothing is going to stop you doing do at your daughters wedding.
Take care Vx
PS Have updated my photo to one taken at the wedding.
Thank you so much for all your replies. It is always really uplifting to have these lovely responses to the waffle I write. I have logged on to Photo Box (thanks for that tip hil66wil) which I think will make compiling the album for my son much less of a long-winded chore.
No date for starting Caelyx yet but I will stock up on anti-mouth ulcer stuff when the time comes. As for my wedding hat and dress, after trying on many dresses (including a £380 midnight blue lace Jaeger one, which was gorgeous but would be far too hot) I didn't like any of them and have ended up dying deep navy blue a dress I bought years ago, and wore for my daughter's christening. With new pearl buttons it looks lovely, my navy hat from my son's wedding still looks fab and will be adorned with some new cream silk flowers - so I've saved a fortune by re-using these things and will spend some of what I've saved on luxury make-up, pedicure, manicure etc The wedding day will be a long one, but fortunately there is a delightful converted pigeon house in the grounds of the venue where I will be able to have a decent rest in between the reception and the evening celebrations. So I know that if I do feel a bit wobbly I can quietly hide myself away without spoiling the fun.
Once again, huge thanks to you all - and BBFC with knobs on !
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B*****, B*******, B*******!
Scan results mixed after 3 Caelyx doses
Caelyx and CA125
Third time lucky?
Caelyx now
