I’ve read all your wonderful messages. Your support and love is overwhelming. I’m sorry I e not replied to the messages but I’m so tired.
Update. Thanks to your recommendations about professor Christina at the Hammersmith, we got an appointment with her yesterday morning. She said she can’t operate on my tumour but she works closely with a gastric team at charring cross. They might be able to do me a stent in my tummy. The tumour is pushing my stomach in a lot. I need a referral from my GP but Christina says this gastric consultant will do his best to help me.
If not, I don’t know what will happen. I’m under palliative care now. Nurses come every day to do my syringe driver and they drained ascites yesterday.
I just want to eat so I can get strong for chemo. I hope they can do the stent and the chemo. I’ve got to hope.
Does all that make sense?
Sending all of you amazing wonderful ladies all the love I have xxxxxx
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Suzanne333
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Thinking of you all the time suzanne sorry i didnt comment before i really didnt know what to say but i know one thing i am thinking and praying for you everyday
Oh my darling. You are in a pickle. Can you tolerate the liquid meals? I was on them a while last year. Or whey powder? All flavours. Hard to find any without sugar though. They kept me going when nothing much stayed in. I would sip the whey powder brew during the day rather than it going in all at once and most of it stayed in.
How is hubby coping? I hope he realises that you need him more than ever for the moment and it's not a time for him to retreat. Mine had a wobbly recently but he's ok again. It's hard for our loved ones.
Stay focused. You can get through this. We're all here for you. Big love and hugs xxxxxx
I’ve managed one of those drinks. I’m trying to keep it down. I’m so hungry. I get a tight feeling in my chest and everything comes up. I’ve got to try and eat and drink or I’ll starve to death.
Antony is being brilliant. When my feeding tube didn’t work he tried syringing the stuff into my tube. Didn’t work as it had a kink in it. Long story about that and we are making a complaint. They left me for a week with it like that. Didn’t attempt to replace it.
He’s been phoning around and chasing people. He couldn’t have done any more than he has been doing.
It was Wednesday they told me there’s nothing they can do for me. My friend was with me. She phoned Antony to tell him and when he walked into my hospital room he crumbled and it broke my heart. He told my son too. Daniel just doesn’t want me to be in any pain. I’m waffling on aren’t I. Xxxxx
Hello again Suzanne, we are really feeling for you, Antony and Daniel. It's great that you got to see Prof Christina so quickly and really hope the surgeons at Charing Cross can help you.
Did you ask the Prof or anyone else about TPN where you are fed intravenously through a tube in your neck? It would build up your strength and you wouldn't be sick.
Maybe it's not appropriate in your case? Don't bother to reply as we know you'll be totally washed out.
There's some lovely messages on here for you - you are a very popular lady and everyone is rooting for you. Love from Woody & Suzanne xx
I’m glad you went to see her, Suzanne. Has your GP done that referral for you now? Push them to do it immediately, if not. When I needed a referral for my clinical trial, I dictated what the letter needed to say to one of the secretaries, and she just got the Dr to sign it for me! It was done and faxed off within the hour, and I phoned the hospital on the other side to check they had received it and find out what the next steps were.
I truly hope this other team of surgeons can help you 🙏 In the meantime, take all the help from the palliative care team to make you as comfortable and ‘well’ as you can possibly be.
It does make sense Suzanne, you haven't lost your marbles yet.
It will be good if they can do the stent and you can get eating again. Then you'll have the lovely cocktail to look forward to. Pity it won't be an alcoholic one.
Something will have to work this time, I can imagine how tired you are it sounds so bad what you are going through, sending all the positive energy I have.. NAMASTE IN YOGA!!!(represents the belief that there is a Divine spark within each of us that is located in the heart chakra,The gesture is an acknowledgment of the soul in one by the soul in another)
Hello beautiful , I bet your nails are still on point , what colour today ? . I am glad Christina could give you the name of someone to help you . Hers hoping that you feel better soon . Big hugs for you all.Julia xx
That sounds like a good plan and it must be a bit of a relief to know that there is potentially another way to manage your symptoms. Lets keep everything crossed that Charring Cross can fit a stent. Take care x
Hi lovely, it’s always lovely to hear from you and you make perfect sense, you need the nutrition to give you the strength you need to be able to have any gastric intervention if they can help. Chase your GP, if you don’t have the strength your family and friends can do it on your behalf, it must be a little bit more hopeful that they are coming up with some further options for you, I’m so pleased the prof was able to suggest this for you. It’s always good to have a target to aim for.
I had some high protein drinks before my surgery, they were pretty diabolical but very effective and very quickly absorbed. I’m sure you have a dietician on board who can offer good advice and who can maybe come up with something that you can keep down long enough to benefit from it.
As always, you have our love and support and bestest possible wishes possible. Keep fighting lovely ❤️Xx Jane
Good to hear that you have lots of support and that a gastric consultant is going to be involved. Having someone from a specialty may provide some additional insight.
So good to let family and friends step up and advocate - they sound engaged and strong and they have your back. Also, glad you have more eyes on you (Prof C and the G team) hopefully they will see another option to bring you relief. NO need to reply - just know you are in my thoughts and prayers. Valerie xx
Sending you lots of love and hugs Suzanne and keeping everything crossed they can do this stent for you so you can get strong again x
Are you getting any nutrition in at all orally? Can’t they do TPN for you until you can get the stent?
Really hoping you get a break soon and start to feel more comfortable x glad the palliative care team are involved now and they are keeping on top of things for you xx
We all want the best for you, the ascites are a pain, had them and wondered if I would ever eat again, kept vomiting acid and the only thing that got me back on track was the Omaprizole.
I am sure your specialists will get you too, I would have been with the fairies if not.
There is always hope and the right people on your case will get you there.
We don’t expect you to reply, we all wish you the best and to a place of recovery.
Pleased you saw the Prof. Even though it’s not her speciality, I don’t suppose she would have recommended you if she didn’t feel there’s a good chance the gastric team can help.
Great your other half has stepped up to the mark. When he was really needed, he was there for you. That’s what counts. Sometimes practical folks are like that, not so good at the little stuff but real bricks when the going is rough.
Hope you get that referral pdq so you can get back to chemo and nourishment of course.
When I was struggling to eat, my GP prescribed Procal (google it) which in 40mls gave me about 200 calories..I'd just sip it (the neutral not flavoured) knowing I was getting 'well-fed'. He also prescribed Maxijule, a white, tasteless powder which I sprinkled onto anything I could eat, e.g. a few spoonfuls of rice pudding or mashed potato, honey on some soft bread and again, this just gave me added nutrition and helped slow down the weight loss.
My fingers are tightly crossed that Prof Christina and her colleagues can help.
The link shows a frog and stork locked in battle...been on my wall for this past seven years:-
Thinking of you - hope a solution can be hound to ease the stomach issues as soon as possible - I remember how dreadful feeling hungry but being unable to eat due to my post op ileus was x
DEAREST Suzanne,What a horrible time you are going through but there seems to be a glimmer of hope that the surgeon at Charing Cross will be able to do something. HERE is hoping with my heart and soul. I feel so for your husband and son they just want to make things better and it is obvious that they love you so much. Thinking of you Chris
So very sad to read how poorly you are, Suzanne. I really feel for you. Just sending my love and a gentle hug and keeping my fingers crossed that you can be helped by the Charring Cross Team, Solange 😊🤞💐xxx
Oh Suzanne, sending you a huge hug and tons of love and really hoping they can do the stent and get you feeling better. Christina is a real expert and must think it is possible. Thinking of you and loads of positive vibes coming your way 💖🌈💜.
I'm so pleased you were able to speak with another Doctor and really hope you get the stent quickly, hope your GP gets that referral over ASAP!!
Can't believe they left you with a twisted tube, that's ridiculous and good for you having a word. Really hoping a you are able to get some food in now. You are constantly in my thoughts Suzanne, much love xxx
Hi Suzanne--have been thinking about you daily and so glad to see your post, but not what you wrote necessarily although the charring cross people sound like a good amount of hope to get your to the point of being able to eat/get your strength back. So the tumor is inoperable but the chemo should reduce/resole it? Would it be operable then, do you know? I guess #1 is finding nourishment that you can keep down. If you can't do it through the mouth down your usual path, they gastro team should know how to get you not to starve. Hope the appointment is very soon and relief as soon as that. Just know you are in my thoughts and just hope to hear better news soon. I was so glad to read about Antony and your son. May be upsetting to see them like that but they are there for you. Very helpful. So much hope and love coming your way. oxoox Judy
I don’t know you but I so feel for you - and really hope that they ( charing X ) can sort you out...may this be “another bump in the road” and love to you and your family x
Suzanne, thinking of you and hoping you can get more medical options/surgery. For eating, have you thought about liquid food? I once found a company that produces liquid food in the States, it's specific highly nutritious food for those that are ill. Maybe there's something near you or online. Just an idea to help build up strength. All the best
Follow you posts and send all the best wishes to you and your family .Keep fighting and if we could each send you a bit of strength be sure that we would 😘😘
I just want you to know I’m thinking of you and praying for you that the new team suggested by the Prof will sort out your gastric problem. Then hopefully you can turn the corner and start treatment again . Keep that courage of yours going brave lady .
Hi Suzanne. Gastro team sounds like the right address for trying to get you some relief from your stomach woes... and hopefully some way for you to get nutrition into your battered body. I feel for you as you must be exhausted by now.
Glad your husband is there for you, also to fight for better treatment.
At this point I hope you've received the referral and maybe had some success with keeping down e. g. some of the high calorie drinks the other ladies mentioned. Thinking of you. Hugs. Maus
Believe you're seeing the gastro consultant tomorrow - we'll be thinking about you. You so deserve a break from all the bad stuff, so really hope this will be the turning point. Love and best wishes from Woody & Suzanne xx
I’m not seeing the gastric team at London, I’m going straight into their gynaecology oncology department. They may then get the gastric team involved.
I saw my consultant last week. He wants me to resume chemo. I’m eating now. I have my ascites drained every other day and now I’m able to eat. I’m still very thin but I’m eating so much better. I’ve not been sick for 4 days. The meds I have through the syringe driver stop me being sick.
I have a lovely hospice nurse and the district nurses are lovely too.
I’ll let you know what they say from London tomorrow. I just want to be here for longer. T
My local hospital sent me home to starve and die. I’m not starving and dying now. I’m fighting.
Wow! That’s amazing Suzanne. So have you moved your care to the London hospital now? Are you there as an inpatient at the moment? I think of you all the time! Vicki x
I’m there tomorrow. Will see what they can offer me. They may have better ideas and resources than my consultant.
I had a blood test on Thursday. My CA125 has gone from in the four thousands to the two thousands. This showed that the one cycle I did have of cisplatin and gem must have been effective. That’s why my consultant wants me back on it.
When I was discharged from my local hospital they said no more chemo, no more anything.
I’m keeping positive. I’m not wanting to go anywhere.
What wonderful news !!!! That is great you are eating again and your ca 125 went down . You’re a fighter and it’s working . Keep us posted lovely lady . I’m in Texas a long way from you . I’ve got my first appointment after being declared NED in June on Wednesday .
I am so glad to hear you are able to eat again - I’ve had eating problems so you have all my sympathies. I have everything crossed for your next visit x x
How you doing hun xx did you have any progression in your peritinuim spelt wrong lol just keep thinking what to expect next, so worried but feeling strong at mo! heading for more chemo etc but a 3 week cruise in January inc getting married, stopped thinking about what if SHALL I CANCEL ETC ,is that wrong or am I being naïve ! nice gin is whats needed and sunshine , hugs to all thinking of yous xxxxxx /
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Good Morning 🌄 good news to start but need advice again lol 🥰🤣
