This has been a gruelling 6 weeks since we have been in lockdown and I have been in limbo with progressing cancer, desperate for treatment.
So the cancer has finally begun to cause the extreme agony of twisting and blocking and totally interfering with my bowels.
I have been reduced to a screaming, pathetic, limp rag of my normal self, having to be carried out of my home and taken by ambulance to my local hospital in the middle of the night - four times in the last month!
Thankfully, with intravenous pain relief, anti nausea meds and fluids, I recover quickly, but with my cancer spreading, my bloods are all over the place, my bowels are in terror along with my family.
It’s terrifying to see me reduced to a whimpering rag, too weak to even call for help when I have am under attack.
So, finally, because of my symptoms escalating, my Oncologist promises to get me into Chemo soon, but I have another problem.
I tested positive for Covid-19 sux weeks ago.
I was treated, totally recovered, have had no symptoms for the last month, but I still test positive.
This may make it hard for our Oncology department to treat me for fear of my infecting others.
I always wear a mask and gloves, and I could come in when no one else is being treated, but I just don’t know what the plan is yet.
Only that I am desperate to stop the spread of my cancer.
Meanwhile, I am now on the low residue diet, which is opposite of my usual healthy whole foods vegetarian diet.
But it’s pretty close to my normal Chemo diet, when I can’t tolerate flavoursome foods, so it will be easy to stick to. I just hope it works to keep me from having another attack.
Just letting you all know what is happening with me.
I just never thought this would happen to me, because I planned to keep the cancer at bay.
Letting it do this to me is not what I planned and it is pretty frightening.
So, just to let you know that the dreaded bowel blockage problem is simply a nasty, undignified and cruel aspect of uncontrolled disease.
And I am encouraging you to not wait for treatment, if you have disease progression in your abdomen.
Wishing you all the best,
Hugs,
Laura
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Lindaura
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Oh Laura how awful for you, so sorry you are suffering, I can only hope that your oncologist sorts out some chemo soon. I think I may be heading for more chemo and intend to ask about paying for a private room , this might be an option for you also? My hospital has a mobile chemo unit that visit you at home, I haven’t researched the criteria yet, but it is worth exploring every possibility, if of course you feel up to it. Take care and good luck 😉 xx
My Chemo regime is a short one, probably 2 hours in total, so I think it could be easily facilitated.
The trouble for you, if your infusion is lengthy, is that a nurse has to be observing you, in case you have a reaction, which would neglect the others in the Chemo Suite.
Hi Laura - I am waiting CTscan results which I had yesterday, I am currently on Niraparib but I don't think it is working as CA125 is 750 it was 150 when I started two months ago. Reading other posts I think weekly taxol is the next step, as I am BRCA negative not too many options exist. I think I heard on the news this morning that chemo treatment is to resume at most hospitals, so fingers crossed we can both get back to the battle very soon. x
Laura Im so sorry this is happening to you You are such a positive fighter but pain + fear is a terrible combination so it’s little wonder you feel so wretched. My thoughts are with you. I hope they sort you out today. X
Ive just te read your message and something strikes me. My son, daughter in law and an exchange student staying with them all went to be tested for CV19 because they were sure they’d had it. They tested positive which means they’ve had it and have antibodies the girl tested negative which means she hasn’t had It and therefore is still susceptible. You’ve tested positive so surely that means you have a level of protection from the disease now? That should be good for your ongoing treatment. I hope so.
I am so sorry to read your post, this is such a cruel disease without the added Covid complications delaying vital treatment. Bowel problems are awful so I really sympathise with you. I had a stoma which was finally reversed last September but it’s far from perfect. I’m constantly taking laxatives just to relieve and have pain too. I’ve tried to get appointments with the colorectal surgeon but can’t. I had my ca125 done at the end of March and that was ok and I’ve had scans so it’s just adhesions and scar tissue nonetheless very painful. I so hope that your oncologist can find a way to start your chemo soon to alleviate your problems. Sending big hugs x x x
The hospital general surgical team saw me last after studying my CT scans and advised me that my small bowel was so scrunched, I had to be really careful with my diet, no fibre or residue, chewing everything well so I would only be digesting tiny bits.
I am only using Docusate Sodium for stool softener- no bulking agents obviously.
My digestion is actually working, but my last attack was just caused by too much fibre and not fitting through the small bowel.
So if I can make it through a week with no crises, this diet will be the answer until Chemo destroys this growth.
I can sympathise Lindaura I was admitted to hospital last week with pleural effusion, treated with antibiotics in isolation until my Covid test came back negative but I
need a lung drain and to start chemo but despite this being promised since Friday nothing has happened. I am on oxygen and just sitting here. I think the reopening of cancer services has meant the workload has suddenly increased and I am not near the front of the queue..
My PE should have been picked up four weeks ago by chest X-ray but my local hospital was only X-raying Covid patients at the time. Hope we both get our treatment really soon! xx
Dear Laura, I am so very sorry you are going through this. I know that you always say treatment should be aggressive and you don’t believe in watch and wait at all yet now you find yourself in this awful situation. I hope so much they will give you chemo right away so you don’t have to deal with the bowel horror again. That’s really strange that you still test positive for Covid. Did your husband catch it from you? I’m sending positive vibes and hope that you will get what you need very soon.
We are not certain how we got the virus, because we both took the train to London for my last trial appointment at the Royal Marsden just a week before the shit down, ate out, etc...
But my husband had also gone to a Jazz gig the night before, with his favourite Bristol Band, and later, they all came down with the virus.
I had been warned by my husband to be more careful, but I did not believe him, as none of the staff at the Marsden seemed concerned, so I was very nonchalant.
Luckily, mine was a mild case.
I did not even know I had Covid- pneumonia until the X-Rays came back.
Sorry to read this - I have similar bowel issues due to post surgical adhesions and it really is grim when an attack comes - I hope that they can resume treatment as soon as possible - I don’t know whether you meant this by the phrase “letting it do this to me “ but you haven’t done anything right or wrong and sadly I think an easier ride and longer survival is largely down to luck x
I just thought I would be so proactive that I wouldn’t go without treatment and therefore could avoid some of these awful symptoms so many of us have to suffer from.
But I also realise, that my cancer, although not as aggressive as many others, is turning out to be a lot more stubborn than I would have wished...
Yes the circumstances are not ideal when one needs and wants practice treatments - fingers crossed they find a solution to treating you despite your ongoing positive Covid 19 tests x
LAURA, I WAS JUST THINKING OF YOU YESTERDAY, WONDERING WHAT HAPPENED
AND HOW YOU ARE DOING AFTER YOUR BOUT WITH THAT AWFUL VIRUS. I'M SO SORRY TO HEAR YOU'RE GOING THROUGH THIS. YOUR DOCTOR NEEDS TO GET GOING SO YOU CAN FEEL BETTER...SOON!
Laura! In the midst of this agony, you still manage to spread information for everyone's well being. I am so upset for you and really pissed that you're going through this. You know what you're doing and always have. Forcefully take your next step to chemo. I'm no dr but I would guess that you're testing positive and maybe have the antibodies? They are medical professionals and will figure out a way around it. Most importantly, get that chemo to arrest any further progression and then make your way back to our dear Laura as we know her.
You will be in my prayers and thoughts as well as your family. If you can, please keep us posted. Maybe there is another person out there with OC and Covid as well and they can contribute toward a solution. But, as I said....you're in good hands and they will figure it out.
Laura - I wish you well and that you don't have any further blockages. I assume you know what your next chemo will be if only you could have it. Did you test negative after you recovered? There seem to be a number of reports regarding this but whether you remain infectious to others doesn't seem clear.
Dear Laura , I am so sorry that you are having such a horrible time. I do hope that your oncologist can get you back on treatment. Good idea abou the private room.
Things are bad enough for you without this covid19 .
I’m due for my blood check next week. All consultations are being done over the phone .
This is the worst news I've heard about cancer treatment, especially after all the current news about the abandonment of cancer patients. This is the last thing any of us want to hear from you. There has to be something you can do to convince them how desperate you are. I suspect you've travelled down every avenue for answers and I'm not proficient enough on the subject to give advise. You're the one we all rely on to advise us. I pray during the next few days you'll have some better news from somewhere. I got in touch with my MP in North East Derbyshire enquiring about Avastin who was quite responsive. Maybe a national newspaper would help.
Laura sorry to hear what you've been through, can't imagine how painful that must have been for you - I hope you have no more episodes and you get treated ASAP. Take care xx
So sorry to hear this news. You are at a terrible stage in the progression of the cancer. I hope that you are able to resolve the dilemma you have over treatment and CV-19 positive.
This postcode lottery seems so unfair. I am in Scotland and have had no delays in treatment. I too was diagnosed with sub acute bowel obstruction on 15 th April and started weekly carbo and Taxol last Friday only 10 days after diagnosis. Luckily I have not been hospitalised and am following the low residue diet and I think it is helping. Not hard to follow as my appetite is not great anyway.
Oh you poor thing, I really feel for you. Treatment or delayed treatment really is a postcode lottery in England. I hear of areas nearby that are delaying treatment, yet 40 miles away a private hospital has been requisitioned solely for cancer patients. I hope you get the treatment you and soon. xx
So so sorry to hear about the awful and dangerous problems you've been having both with your cancer and Covid. You have really been suffering but are very stoic in the face of everything you've been through. Like most oc ladies our bowels give us lots of problems - for myself just a bowel blockage that was resolved with meds but always an issue and requiring meds to enable the bowel to pass material without too much trouble. I hope that your onc. can now pull his/her finger out and get you your chemo asap. Fingers crossed for you and best wishes Gwen Xx
Laura, following my bowel blockage which really frightened me (along with other things with this horrible disease), I tightened up on my constipation meds, which I've always had to take some off - I now religiously take 1 docosate capsule each end of the day and also 1 (was 2) sachets of Laxido powder. I have also liked liquid so I drink plenty of tea, and green tea, also plenty of soups - I ver between white bread and wholemeal thin sliced. I make sure I don't eat, eg. the pith and stringy bits in oranges by sucking the juice out and spitting out the pith, also generally soft foods, gravy, etc. Hope this may help you - give you more ideas perhaps. Gwen Xx
Oh Laura, how awful for you, I hope they find a way to get you your chemo as soon as possible, bloody Covid19 virus and the source of it 🤬.
I hope you get relief from all these awful side effects of our disease very soon love, keep your inimitable humour and strength going, we’re all here for you in spirit, I send love and virtual hugs via the interweb ❤️Xx Jane
Hi Laura, such a sad state you're in. When I had bowel blockage I was advised to eat nothing for a week or until there was either a small stool or wind. I must say even though I was in hospital watching others eat I wasn't hungry at all. After that I was told not to eat any fibre for at least two weeks. This was easy because I love my veg and am practically vegetarian. I had no medication at all.
What stage is your cancer? Mine was 3C and started, so they said, in January and I didn't start my chemo until September. That was 7 years ago. So I'm hoping this might make you feel a little less scared.
I do hope you get sorted out soon and I must say I didn't realise Covid-19 lasted so long after you've had it. I'm getting inundated with info on the TV and some of it's getting muddled.
All the very best to you and keep us informed of your progress.
I imagined you were having a shit time. I have been to hospital 3 times in a row recently and the last time was to have a stomach drain fitted permanently, but I am now having problems with leakage but begin followed by the emergency chemo team and district nurses. (The hospital for chemo patients has been moved to the private hospital - away from main hospital. ) Everyone one has been great, following up to see how I am progressing and today I hope to have a wound bag fitted today (this is new for me), but not wanting me back in hospital.
As you know I am on weekly taxol - this week having a well earned break. As it is begin done private, still going ahead, but not without its risks. I have been a broken woman in these last few weeks, with diarrhoea, constipation and not keeping food down. My son has moved in with us as my husband is more broken than me and he has given me the strength to carry on, but also because the chemo is working at moment. I so know where you are Laura and so want you to know I am here for you. So know where you are. The most enormous hug to you and the family.
My diet also gone out window because of the taste chemo has given to everything.
But sorry to hear about all your digestive issues.
I have been dreading the Stoma, hoping that my previous good digestion would save me, but this recent experience has reminded me that none of us can count on anything with this disease.
I know what you mean about eating on Taxol, very difficult.
I spent my sleepless nights trying to think of some kind of food I could find appetising.
I hope your weekly Taxol knocks your cancer back.
And I hope your husband recovers with the support of your son.
My adult daughter moved in with us when I first became ill, and she has been invaluable.
She makes all my meals, does the household shopping, walks the dog, waters the garden, buys me pretty garden plants and seeds. She has been a joy.
My poor husband is okay, pretty frightened by my last several distressing hospitalisations.
Devastated to hear your news - you are really going through the mill. You are always the positive one on here, if anyone can get their treatment sorted out you can. I can't imagine what you are going through but this situation is one of my greatest fears. I have been fighting for nearly three months to get the oncology team to continue investgations into possible return if my cancer. I have been experiencing symptoms for a while. I am not in excessive pain but I'm aware something is there, if you know what I mean. This is such a rare and aggressive cancer I was really alarmed at the delay. Finally my consultant oncologist arranged a CT scan - I hope this is a positive sign. If the cancer has returned, the good news is my CNS tells me the hospital never stopped treatments so, hopefully I will be able to get treatment if indicated. Meanwhile I hope you get your treatment very soon. I'm keeping everything crossed for you.
Thanks. Six days and counting. Thank God my oncologist decided to intervene when my ca125 rose again. I don't want to wish this horrible disease on myself again but the relief of getting some results will settle my mind a little, I think. 😊
I am so sorry Laura, you have had a really tough time. One of my biggest fears is the dreaded bowel blockage., and you can never get the thought out of your head, as it is the first thing my Oncologist asks each time, and when I have scans, it is always mentioned in the report. "No visible partial or full blockage".
I have been worried about you, as it is noticeable when you are not on here, offering support and advice. I had seen how really bad it is in the UK, however I had not fully appreciated that cancer treatment was so severely impacted.
Here I was, concerned for my fellow NZ cancer patients who were having delays with Scans etc, however chemotherapy and radiotherapy has been proceeding throughout the lockdown, as have urgent cancer operations, while you all have been having a terrible time. Knowing the stress of even our issues, is nothing when compared to all of you
We have just had a partial lockdown lift this Tuesday, and hospitals have re-opened their outpatient clinics, and have re-started Operating. My husband was rung last Friday to say that his operation would be on Tuesday morning, the first day they commenced. He has had a salivary gland tumour removed, (Parotid tumour), and is now back home. The tumour has gone for analysis. One of my neighbours is also having his cancer operation this Friday, so things are moving, and they are prioritising waiting cancer patients, who have had less urgent needs.
I have my fingers crossed for you that a way is found to start your treatment as soon as possible, despite the damn Covid-19. I had a good response to carbo/gem for second line, and it slowed things down for a year, so hopefully it will be just as effective for you. I also had a good response to just carbo for third line, and have my fingers crossed that I can stay off treatment for another 12 months. Like you my cancer is not fast growing currently, (touch wood), however I have never been NED, and I am Brca negative, so have limited options. Please know that you are in my thoughts, and we are all with you every step of the way. Therese xxx
Don’t lose your "mojo" Laura, Think positive thoughts. I have come to rely on you lifting my spirits when times are bad, and we now need to do the same for you, when you are going through tough times. Much love and good wishes, Therese.
Hi Laura--it has all been said already in other responses--you have so many who care, but wanted to say I truly understand how horrible bowel blockages are, and without treatment being in a bit of a free fall wondering when the next one may hit. Someone on here, a couple of years ago, posted a great low residue diet and I kept it, so if you would like to see it please message me and I will figure out how to attach it to you. You know more than so many, I assume you have your own low residue diet but just in case. I am so hopefully you get the call soon to come in for your treatment. I have found in all my treatments that if there is a delay to start, the first chemo treatment I then get tends to provide a more dramatic improvement, possibly because I gave my body an unintentional break. Hoping that for you as well and hospital trips, pain and suffering will be short lived. So so sorry you are going through this--I hope you test negative soon or as another suggested, you can get a private room for treatment. Hugs, Judy
Judy, I will private message you about the diet, but perhaps it would be better to simply post it to the forum? It should not be controversial and so many of us will one day experience the dreaded bowel problems in which the low residue/low fibre diet is important.
Meanwhile: I received my long awaited call from the Chemo Suite and actually have a date to start.
Not quite as soon as I had hoped, but they have to wait two weeks from a positive Covid test, which means I start two weeks from today: 15 of May.
That’s not so bad as ling as my cancer does not accelerate.
Right now, I have no ascites, thank goodness, so if I can keep my poor bowels happy, I can make it.
HI Laura--I am so glad you have a date to start. I am guessing it makes your mind feel better than your abdomen right now but its coming soon. Good idea to post the diet but I don't know how to attach a file. If you know, I will attach as soon as I get the instructions. Good luck with keeping the beast at bay, as best you can. ooxx
Hello, I'm so sorry to jump in. I wonder if you would mind sending me your low residue diet, I too am suffering terribly with bowel blockage. This is my third recurrance of ovarian Cancer. About to start caelex for the second time. Have had paxo, carbo, bev, caelex, niraparib and gem. In my 4th year now. Wish you all the prayers, love and hugs xx
I can definitely sympathise with you in all counts.
I am still searching for the magic bullet and am hoping I find it this month. In August, it will be three years, but I did get six months of NED after first line.
Otherwise, I have been in constant treatment, but this is my first bouts with the dreaded blockages.
So, I looked up Low Residue diet on mine and they were all the same, basically.
Stay away from raw vegetables, whole grains, most cooked veggies, except spinach, skinless potatoes, sweet potatoes and squash and mushrooms!
Eat Lightly Scrambled eggs, cottage cheese, mild cheeses and cream cheese, halloumi, mozzarella, tofu, etc.
The first day home from the hospital, I made a huge vat of soup using every vegetable in the house. Than i strained them all out, added 6 peeled potatoes and sweet potatoes , boiled them and than purred the soup.
It lasted for several peaceful nights, with additions of chopped mushrooms and chopped up Halloumi cheese, or bits of sour dough to make it more interesting.
I also add Ripe avocados to my scrambled eggs and cheese.
And I eat cream cheese in crumpets with seedless jam.
Hi Laura, thanks so much for your reply. For the most part, this is what I'm eating. It's so hard to transition as I've always considered myself to have a relatively healthy diet. In the words of my oncologist, eat junk !! Get the calories in. Madness to me !! Take care and stay well xx
I would be happy to! I don't know how to attach it--do you know how to private message me and give me your email? I am so sorry not to be better at this! I have it at the ready Horsemad50!! Just let me know where to send it. oxxoxo
Hi Laura, So sorry to read your news, you're really having a tough time. It occurred to me that as all your chemo locally has been moved to a private hospital the one thing there they won't be short of are private rooms. The other thing is I read in the this morning that South Koreans now think that those people re-testing positive again don't have a second infection but have fragments of the virus remaining. Am attaching a link which I hope will work.
I am in the U.K., which has been nearly as backward as the USA in fighting the Virus.
The NHS is a monolith Organization and really wonderful, but policies from in high have been a little inhumane as far as we Ovarian Cancer sufferers are concerned.
Thankfully, I received my long awaited call from the Chemo Suite and actually have a date to start.
Not quite as soon as I had hoped, but they have to wait two weeks from a positive Covid test, which means I start two weeks from today: 15 of May.
That’s not so bad as ling as my cancer does not accelerate.
Right now, I have no ascites, thank goodness, so if I can keep my poor bowels happy, I can make it.
Hang in there. I live in france and am sure they wd have figured something out. Meanwhile if you havent tried ginger tea (digestion) and papaya green leaf tea (platelets) also find a practitioner of reiki soothes calms wonderful. All the best going forward
I'm so sorry you're having such a rubbish time. You must be so cheesed off at this nightmare situation. The disruption to cancer care has been awful on top of feeling poorly anyway. I'll be saying my prayers that you get your chemo and can start on the road to getting and feeling better, take care, sticky3006 xx
Thats good, you have a plan so it must ease your mind a bit. Keep taking a regular small dose of laxatives (I cant do without them now despite drinking gallons during the day) and stay focused. You've been through so much but I think you're made of strong stuff! Take care, sticky3006 x
I’m so glad I live where I do ( Queensland, Australia) my treatment and hospital has been very good and no waiting for anything. My oncologist a very proactive and did not believe in wait and see. I saw an English doctor re a trial and he was all about that and Keith just shook his head. I hope you’re doing better soon, this disease is just awful and to have covid as well seems to much to bare.
Glad to hear you’re being taken care of. Also good to hear the virus was not that bad to you. I’ve been paranoid about it with being on Chemo at the moment. We are so lucky here as we have really managed to get it under control. I went to all he shops with my husband and was so excited to go to Woolworths.
Hi Laura So sorry to hear what you have been through. Its a scary time let alone waiting for cancer treatment. Glad you get to start your chemo on the 15th. All the best of luck and very best wishes to you
I am so sorry to hear all what you have been through in the last few weeks. You are so loved and missed on this forum - I hope that you feel all the love and hugs winging their way to you in Bath. Thank goodness for some good news about the 15th although it is much later than you must have hoped b..... Covid -19 as if we don't have enough to put up with.
I always like to hear from you as my OC seems to follow yours and I have begun to get bowel problems - under control at the moment but I must be careful. I hate this low fiber diet - as you say it is contrary to everything we have always held up as healthy. How I miss tomatoes too and fruit and ......... but needs must.
Please don't blame yourself for what is happening to you. You haven't 'let it do it to you' despite your 'plans to keep it at bay'. We all hope to do the same and fight tooth and nail against it but I have to say that unfortunately it does usually win in the end. My CA125 is increasing with every blood test despite my weekly Taxol (546 yesterday) and I am not looking forward to the results of my next scan as I know something is going on but I am not giving in yet. Let us enjoy the wonderful flowers, the good weather we have been having, the love of our family and friends (via Zoom!!! Good to hear you have your daughter at home) and make the most of every minute when we feel reasonable which I am sure you do.
Dear Laura, as if this disease isn't hard enough without the added horror of Covid 19. Your post was terrible to read. I've been that whimpering wreck on all fours waiting for another ambulance as my family do all they can to help. I'm glad you now have a date to start chemo. You are a brave, strong lady and it's upsetting that you are having such a rubbish time.
Keeping you in my prayers and hoping that the chemo does it's work quickly.
Laura I’m going through the same, it’s got better as my bowel stents have settled but told still high risk of bowel blockage because of disease, I thought that stents were the answer but just making bowels to move, been in pain for weeks ca125 800 waiting for answers on my profiling before they start me on taxol! Also just got prescription from COC for extra supplements! Keep thinking bad thoughts so scared but hiding it from everyone, thought of loosing my hair again and hiding it from my beautiful Grandaughter! So if I do I will say I have alopecia
She is 11 yes old and I don’t want her to no, she is my life! Asked consultant am I terminal yet! No definitely not🙏 So why so much pain! I’m ranting on a bit but feel your pain! Big hugs😘😘😘
Also forgot to say I started taking a gut probiotic my bowel is working without movicol and stool softeners🙄 hopefully this might be a good med! Also started serrapetasse for scar adhesions 👍🏻Let you know if it keeps going 🙏 well xx
Thanks Laura, start taxol on 16 may, can’t believe I just broke yesterday on phone to consultant because the thought of loosing my now long hair! How stupid am I ! Still fill so sad but been told again not terminal ! Just got to smash it again! Mine is all seedings that gave spread! Will use cold cap so 🙏 it works! This is the first time I felt sad low scared not sure why! But got to get on with it 😬😥🙏😘
I have to admit that it made me very depressed to lose my hair a second time, but I could not face the cold cap.
Fortunately, I have some darling wigs, which I wear from the crack of dawn to when I turn out my light at bedtime.
Deep in the back of my mind is a worry that if I wore the cold cap, the chemo wouldn’t kill all the cancer cels that might have sneaked up to my scalp.
Anyway, it’s been 7 months and my hair has only just begun to grow back, like a glistening fuzz on top of my head.
I feel for you my unpredictable bowels and abdominal pain rule my life. Awful for you to have covid thrown in on top. Good luck I hope you get treatment very soon.
I'VE BEEN THINKING OF YOU AND WONDERING HOW YOU ARE DOING. DID THEY START YOUR CHEMO YET? I HOPE SO. ALSO HOPE YOU ARE FEELING MUCH BETTER AND NOT IN ANY PAIN. I WAS VERY SORRY TO HEAR WHAT YOU WERE GOING THROUGH BUT KNOW YOU WILL COME THROUGH ALL THIS AND BE WELL AGAIN.
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