Good morning ladies. I hope you are all as well as can be in these uncertain times.
I had a phone appointment with my oncologist yesterday. She had the results of my sigmoidoscopy biopsies which were clear so I was delighted. I had hoped to start weekly paclitaxel today. My ca125 has almost doubled to over 360 in the last 3 weeks but unfortunately Coronavirus has put pay to me having chemo in the foreseeable future. The risks of me catching Covid19 outweigh the benefits of weekly paclitaxel. I am not to have blood tests because that involves me potentially coming into contact with the Coronavirus. I will have phone appointments every 3 weeks and then hopefully I will be able to start paclitaxel when this whole pandemic is over.
I just hope that this will not be too late. This is due to be my 6th line treatment and my cancer is definitely progressing. I understand the importance of keeping me safe from Coronavirus but I'm so upset that I can't have treatment. I feel like I'm not worth saving.
Sorry for miserable post.
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Welshandproud
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Hello, I am so sorry that you are in this situation,and know that it must be so,so hard for you.
I have only last week been told that I have a recurrence & I am waiting for a biopsy which I probably will not get due to the same principles. I felt as if I was written off when a consultant told me that my cancer had returned and sort of brushed me aside. He did apologise for being so blunt,and I came away thinking they don't care. He is a specialist in the colon etc.so that was following a colonoscopy where 4 benign polyps were removed and from he saw on the CT scan.
I am waiting for the Macmillan specialist nurse from Singleton hospital to call me with some indication of what is going on.
For me like you this is all so distressing, as I have high grade serous cancer.
Let's hope against hope that all who are having or expecting treatment will get it sooner rather than later.
That's so unfair Caleda4. Sometimes these consultants can be incredible brusque. I hope that the Macmillan nurse at Singleton is more sympathetic. I also hope that your treatment can go ahead and I'll keep everything crossed that they can start to treat you quickly. Is this your first recurrence? Wishing you well in lovely Swansea. I miss my Joe's ice cream. Sending you a big virtual cwtch xxxx
You absolutely are worth saving! And you will get your chemo... they just don’t want to risk killing you by exposure to the virus while your immunity is low. I had an insight into the situation at my local hospital because I need a chest X-ray. They are only dealing with people who have pneumonia atm and my doctor said ‘ there is no way I am putting you in that queue’.
They are trying to work with our best interests in mind... even if that means delay. Sending love xx
Thank you Lyndy. I know you are right and I don't want to catch Covid19 but I just panic that my cancer will progress and that I won't be able to have treatment after the pandemic is over. I think I am still in shock. I hope you too will be able to have your chest x-ray before long. Xxxx
I have actually had the virus! Tested positive and was treated for only 2 nights at my local hospital and got better quickly.
BUT: I need treatment for my progressing cancer and they are very hesitant to give me any.
I get the distinct impression that the NHS has handed down and edict that those of us with recurrent cancers should get out of the way for the totally curable ones.
My hospital is practically empty.
There have been very few Covid cases here in Bath.
But they are so afraid of this surge, they would rather let us fall by the wayside.
My Oncology team is VERY negative about me pursuing treatment and I am very angry and ready to fight for it.
I am an older woman, but I am a vital woman and damned healthy inspire if having had Covid-19.
This weird interlude feels very dangerous, especially to us, with Ovarian Cancer.
Laura you are an incredible woman. You have battled cancer and clinical trials, overcome Coronavirus and you will get your treatment. Please keep fighting for it. You deserve it xxx
Wow Laura! I feel sure that was a huge boost to all our fears and quandaries. As positive and strong as we're instructed to be by all well meaning friends and family it's not always possible is it! We have to take things into our own hands sometimes and get the right answers. Are we being shelved for whatever reasons and should we just accept what the oncologists are advising us or should we take the risk and insist on treatment. Niraparib was stopped after 2 weeks for me because of very low platelets, Bloods improved when taken in hospital last week but the oncologist like everyone's oncologist advised against continuing with Niraparib because of going back to the hospital each week for more blood tests. He is ringing me on Wednesday to see if I have made a decision to go ahead or play safe and wait for several more weeks until we know more about the coronavirus situation. The hospital I attend is purely a cancer hospital and every care is taken to keep everyone at a safe distance and waiting in reception areas is avoided. Could this not happen for all cancer patients needing treatment. Would it still prove dangerous for us all. How do we decide? Keep fighting Laura you've come a long way and we cannot let age or the stage of our cancer be a barrier. I may sleep a little easier tonight not really sure but I hope everyone else will.
I pray for poor Boris Johnson our country needs him.
Hello again Laura, thanks for your reply. Since I last spoke to you I took your advice and phoned the CSN . The Oncologist phoned later to ask me to go in to see him this Thursday. I have to go in early 8am ish when the hospital is going to be very quiet. My husband, Brian will have to drop me just inside and the nurses will then take over. Having bloods and weight done first then going to see the oncologist as he wants to discuss another Parp Rucaparib which may have less side effects than Niraparib. I was on 300 per day of Niraparib but he doesn’t want to risk even a lower dose. I was amazed when he rang, I wasn’t expecting that. I know you tried Nirapabib and it suited you but didn’t cure you. I’ve never heard of Rucaparib so don’t know what to expect. I hope your hospital have decided to continue with your treatment I would have thought you’d be much safer having already had Coronavirus. You deserve the best Laura you’ve given so much support to all of us.
My platelets rose to 149 last count after a transfusion so I’m keeping my fingers crossed.
We’re all praying for poor Boris here and everywhere. I hardly dare switch the news on for fear of bad news.
Please keep in touch, everyone cares so much about you.
It disturbs me that you doctor isn’t willing to simply lower your dosage, just as mine refused to raise my dosage, even though I had no side effects at all and my blood counts stayed strong.
Rucaparib is another PARP, but it looks to me to have even more side effects.
I had blood tests today and saw the oncologist who said he had to stop Niraparib altogether because my platelets had dropped from 165 to 50 then down to 9 so rapidly and he didn't want to kill me. No had blood results yet but said he would arrange the prescription and delivery of drug ASAP. He didn't phone back today so maybe tomorrow although it's Good Friday. I did ask about the district nurse but he felt that was too dangerous so has arranged for 2 weekly blood tests at a new " drive though" in The Sheffield Arena Carpark, which has been turned into a testing centre for Coronavirus and blood tests. We just have to stick our arm through 6" of the car window. I didn't ask about Olaparib as I am BRCA negative. He said Rucaparib could help but once more reminded me it will not extend my life expectancy. He is lovely but quite blunt and describes everything in great detail. I suppose this is how he has to be. I must say I'm naturally apprehensive as he said this is a fairly new drug and there is not much proof (if that's the right word) that it's successful. I'm speaking as a layman as I can't remember everything he said. He wanted to get me out of the hospital ASAP as 3 or 4 doctors had the virus and 3 cancer inpatients had also caught it. My husband was not allowed to come in with me and he's the one who usually remembers everything. Long reply again, sorry.
Starting to worry now about Rucaparib. I'm having shooting pains in my breast and tummy too and I know I have some ascites returning but I didn't have time to discuss any of this. Maybe tomorrow.
Everything is so horrible everywhere isn't it!
I hope things are improving for you in every possible way.
What bad news. It sounds awful in your area and I am really lucky to be living in such a small city.
Rucaparib, according to my research consultant, really has the same efficacy as the other PARPS.
I don’t get that remark about life expectancy. That’s the kind of remark to keep us up at night.
Of course it will extend your life if it works!
Even for me, it slowed progression to a crawl, and thank goodness,,I have not experienced ascites or the dreaded pleural effusion, since being in treatment.
Without treatment, our cancers can spread quickly, but with treatment, in my experience, the cancer has either been destroyed or it’s progression slowed mightily.
I hope you get some good advice and treatment ASAP!
Thank you for tour reply Laura, I haven't heard a word back about the blood results but no news is good news. Do Parps reduce ascites at all by the way. I worry about that. I don't really know why ascites returns, do you ? I only know I have some pain now where the ascites and tumours are located. Only to be expected.
Hope you enjoyed Easter as much as was possible under the circumstances.
I will think that Rucaparib will extend my life expectancy from now on.
Thank you for your help'
Love to you and all the best with you next treatment.
Hi, I think we are all feeling very worried. I’ve just got my first recurrence and been told no chemo till after the Coronavirus settles down. So fed up.
Thank you different and I send sincere condolences for your sad loss. This is such a difficult time for so many of us across the world but it really hits us as it gets closer. Let us all try to get out into the garden or on the balcony for some well needed vitamin d this weekend to give ourselves a boost xx
Perspective is so important at a time like this. It’s ok to feel angry or as though they think you not worth saving but that really isn’t what’s going on. The risk is that c19 will get you before the cancer does. I sometimes think I wish we got the choice.
It is really worth looking into some of the supplements and off label drugs which can be effective for some so you do feel you have some control over the next few weeks.
Look up Joe Tippen and see what you think.
My friend was looking forward to seeing her partner today after self isolating for 14 days with the adults with learning difficulties which she looks after in her house. She called me to say they found him dead yesterday. This is not something to trifle with.
Thank you Artgreen. Yes you are right. This is definitely a dreadful virus and I send my sincerest condolences for your sad loss. Yes I think in time I'll get a little more perspective but I'm still in shock at the moment. I fear that my delay will affect my life chances. Please keep safe xxxx
Hi Gwen, I am not taking any chances I can avoid so I’m throwing everything I can at it. Jane McLelland’s book How to Starve Cancer is my main bible and Joe Tippens view of fenbendazole is what I take instead of menbendazole which Jane suggests. Since being on my regime my CA125 came down from 11.8 to 9.2. So I’m sticking with it. Not a huge change but as there’s no visible disease at present it’s more of a preventative for me. Looking at some successes on the Facebook pages for both fenbendazole and Jane McLelland it gives me hope.
I too am following some of Jane McLellands ideas. Am going to try fembendazole too. Can I ask where you purchase fembendazole, having a bit of a problem finding t.
Curious about bloods but may be a long time before they are taken
Thanks for your reply - you're always on the ball! Alex I am so interested in both Joe Tippens and Jane McClellands. Would you be able to let me know what you are taking and the doses - I'm currently on a immune system build-up plan via Patricia Peat but I think I need bigger guns especially as I am no longer NED. Your advice also welcomed. Best wishes. Gwen Xx
Wow Alex - that's a lot to take at Breakfast time!! Can I ask, did you have help with this recipe of supplements/meds. or what you just picked up from other ladies? Hope that dreaded CA125 continues to come down for you. At last review mine was at abt. 45 - need to try something! Best wishes. Gwen x
Hi Gwen, I gleaned this from lots of responses over the year from people who are pretty much sticking to this but with some additions which I don’t yet feel are necessary such as doxycycline and melatonin. It is important to read the book but I don’t pretend I’m an expert. Some of the scientific terms are way over my head but all of these do have functions in the book. Or they are research papers / medical articles that show strong anecdotal evidence even if not formally trialled. Most of them are in single trials for different cancers. Janes book also mentions these drugs as being “agnostic”. They don’t care what your cancer originated as they just kill or starve any cancer cells.
Hi Alex, Thanks again your your help. It's a bit like wading in treacle isn't it? I have my review, hopefully, this Thursday so depending on my status then will decide on my next steps. Have a peaceful Palm Sunday. Gwen xx
I am due my 6th lime chemo on 13th April and its goi g ahead I am I. Scotland and attending the Beatson. Hope then to follow up with 3 weekly avastin. Sorry to hear this is happening thought mine would be cancelled. Got letter in a week ago hope things don't change
I know how you feel. I am too worried that I may not get my chemo. Just had recurrence too. There are so many cancer operations too being delayed...so frightening and worrying times for us all. We must try and stay positive through all this I know easier said than done. 🤔
Thank you win. You know just how I feel. I will get my big girls pants on again soon and get my mojo back but I'm still in shock ATM. Sending you lots of love and all the best for your treatment going ahead xxx
Hi there. Sadly I think many of us feel the same. My chemo has been stopped at the 4th cycle I was told that there’s no evidence to say that 6 cycles are better than 4! My friend called me yesterday to say her treatment is also on hold ( different hospital) and a friend of a friend is suddenly all clear and needing no further treatment She is in Wales. I understood that it was the balance between benefits and risks but I also think they are having to make choices and we are coming off badly. Having said that I don’t know how else they could deal with us. They are doing their best and probably feel as helpless as we do. I had my letter from the Ministry of Housing Etc this morning and because of my negative frame of mind it felt very 1984 to me!!!! I’m sure I will rally and get back in positive mode soon but today is a down day. My mouth ulcers mean I can’t even comfort eat or Have a drink 😩
Oh JustKBO I feel your pain. Yes I sometimes feel that we are being fobbed off with excuses when what they are really saying is that access to treatment needs to be prioritised because Coronavirus is such a nasty lethal killer. Let's just hope that this pandemic is over soon before lives are list. Sending you lots of love xxxx
I’m so sorry you can’t get the chemo right now. In the US they have stopped elective surgery and routine doctor visits but cancer treatment is a high priority. It’s more that patients are worried about going to hospitals. It does seem like you should have a choice between the risk of covid 19 and the risk of not having chemo. Hopefully it will not be too long before they start treatments again!
I'm sorry to hear that you're feeling upset. It is an anxious time at the moment. We're here to support you Monday-Friday 10am-5pm (with extended hours until 8pm on Tuesdays), so please do get in touch if you'd like to talk anything through.
You can also register for one of our 'Staying Connected' workshops and support and information sessions at ovacome.org.uk/staying-conn..., which are accessible worldwide. We'll be adding more sessions in the future as well.
I am so sorry you are feeling anxious and scared. HUGS!!!! Just remind yourself that delayed chemo is just as good as jumping on it right away (at times) . My choice recently was to NOT get Covid-19 by going to my local hospital (who NOW has 48 cases of Dr/staff/patient with the virus). I am also staying way away from any blood testing or CT scans that were originally ordered 2 months ago because I found a lump in my groin. I have consulted with my GYN/ONC and he assures me a watch and wait is fine right now. Of course I worry but the lump has not changed so that is reassuring. I kinda wish I knew what my CA-125 is right now but it's never been a good marker for me so maybe better not to know that. Hang in there. All this WILL end and you and your Drs. will take good care of you when that happens. Try to distract yourself and remember, we are all here for you.
Thank you so much for that. Yes you're right. The risk of dying from Coronavirus is greater than from cancer at the moment. Avoiding the hospital is probably a very good idea xxx
I think about that as I am out riding my bike round my neighborhood. It is summer here now and I am outside a LOT. But I have to try so hard NOT to go to the grocery or pharmacy, no matter how much I want some social interaction. My adult daughters would KILL me before the virus did if they fund out I had. They do my food shopping, pick up prescriptions, and even come pick up my laundry. I tell them they are spoiling me too much and they will pay for it later (when this is way over) when I have a full blown toddler temper tantrum when I ask them for something for me and they say no. LOL But I am sure enjoying it as it lasts. And yes, they shop for my elderly neighbors also, as I live in a senior community. Much love! Jill
Hi Sian. What an awful situation. It's hard to believe you could be refused chemo because of the virus. I suppose when the immune system is weakened, you are at risk. So stressful to be living with cancer then to have the stress of COVID-19 too. It's unbelievable isn't it. Sending virtual hugs. Jane x
Hi, I totally understand how you are feeling. Today, I had my 5th chemo, after having surgery postponed until after the CV has hopefully declined. To be honest, I would rather be an out patient than be in for surgery for 5-7 days. I go to Salisbury hospital and because we are pretty rural here, cancer treatment is still going on at present. But I do follow a strict diet, take supplements and am doing a lot of research, it keeps me feeling positive. Stay safe. x.
I feel your pain and I can completely understand your frustration at the situation. Of course nobody wants COVID 19 to kill people but like you, I felt last week that those with cancer had been pushed to the back of the queue for treatment and care. I had chemo no. 6 cancelled and then had my appt. to get Olaparib prescribed cancelled twice. I was told not to worry but I was scared, frustrated and angry. After a couple of days I calmed down and realised that perhaps there was more time and I had to trust the doctors looking after me and their expertise.
Please remember that your biopsies were clear which is great news. Take care, sticky3006
Thanks Sticky for that. Yes I have calmed down quite a bit now and see a delay as the best decision at the he moment. I definitely don't want Coronavirus. I agree that we have to put our trust in the oncologists looking after us xxxx
Oh Sian, I cant imagine how you are feeling. I came close to being taken off the trial for Olaparib on Wednesday that that scared me. Stay safe and hopefully they can start yr treatment soon. Kathy xx
Hi, because one of the side effects can be a cough and upper respiratory
tract infections so given whats going on at the moment that puts me at very high risk but given Ive not had this side effect whilst on this trial (6 years 4 months so far) and being what they call their star patient they were keen to keep going as long as I was happy to do so. Apart from my hospital visit I have not set outside my front door for the last three weeks, neither has my husband.
So glad to hear that you weren't taken off olaparib. I had a telephone app with my oncologist recently and I got the feeling that he would have been happy for me to come off the drug. I told him I wanted to stay on it though. Do you still have 4 weekly blood tests? I have tolerated this drug well. I did have a chesty cold about a month ago though and have a mouth ulcer just now. I don't have the same energy levels but other than I'm ok. Rosie
Hi Rosie. No having been on the trial for over 6 years I have 12 weekly blood tests and 24 weekly scans. How long have you been taking it? I feel well. Kathy xx
Been on the capsules for 6 weeks now. To get my bloods taken 4 weekly now I think. There was no mention of scans though- just my CA125 which is low thank goodness. So far the side effects are quite minimal. My oncologist can be quite negative at times referring to when my cancer will come back. I find his response depressing. I keep well and only had one recurrence after 3 years which were small nodules in my abdomen but responded very well to more chem. Your response to being on the drug has been amazing and gives me lots of hope. I am a positive person. X
Have had a cough , which I discussed via telephone withCNS following blood test Was told carry on , blood tests fine , three days later they phoned said on review kidney function test off so have lowered dose . Chest has felt better since so not sure wether to be happy for that or fed up about lowering dose ??? Think they can adjust again later ? Anyway think it’s all in the lap of gods really now , we are also isolating seriously, not much fun but got to be done
I feel the same, and having just read the latest NICE guidelines on prioritising cancer treatment, I feel that a lot of us will fall by the wayside. I had a scan for a suspected recurrence on eighteenth of March, and am still unable to get the results. I have spoken to my CNS and was told that the oncologist would phone me. I have left messages on his answer phone, but have still not heard anything. I feel like going to the hospital and banging on his door!
Your CNS may be off with suspected Covid-19 or helping in another department, mine is in ICU from Monday. Try ringing the department there should be someone else who can help. Good luck, terrible times. Sue x
No Sue. I have spoken to my CNS and she said the oncologist would contact me. I have also just checked and my scan was actually on 19th of March, so I have been waiting sixteen days to hear. My anxiety is sky high!
I'm really sorry, what that and this isolation it makes life which is already difficult for us even more so. I'm sending a giant hug. Try and hold faith until you talk to your oncologist it could be good news that they are keeping you waiting as you could be low priority. Sue xx
That’s NOT good enough, it takes a very short length of time to make a call and update you, he’ll then have a shorter to do list. Get back and tell the nurse how stressed you are and be assertive! Good luck. X
Hi Sian and all. It really disturbs me to read your stories of not getting your planned treatment. It just doesn't sound right or fair. Is it because your immune system is already compromised & so they don't want a bigger burden on your body than you already have, should you catch the Virus. Or is it because they're overwhelmed by Virus cases already at the hospital & can't afford the staff? Or could it be that they don't have enough protective equipment and have had to refer to the list given by a previous poster today? Can you persuade them that your need is great & you will worry too much if you have to go without, & might they relent?
I went for my treatment on Tuesday. No problems but there certainly seemed to be less people there for infusions. A couple of days later, I received an email from a friend from our support group, who'd been there the next day. Again, no problem with her treatment but she also noted less people occupying the seats than usual. She suggested that perhaps they'd opted for Chemo-at-home. I hadn't considered it but she could be right. Do you have that available to you? Nurses who work independently from the hospital, will come to your house & set up there & give you your infusion. It's all legit & professional & not a bit dodgy. Best wishes to you all. Pauline.
I think that as staff go down with the Coronavirus, patients are being put at risk of contracting it too. Unfortunately they tend not to fare well when they get it. The staff have to weigh up the benefits of treatment over the risks of the virus. It must be a very difficult decision to make.xxxcc
So sorry to hear you are unable to have your treatment Sian. Are you based in the Southwest for your treatment?
I go to Cheltenham hospital and I'm suppose to have my 4th Caelyx/carbo treatment on 14th April.I'm wondering if the hospital have cancelled all chemo?
Just hope I will be able to have it.Take care and hope your hospital will be able to provide chemo fairly soon when this awful virus is over.
I am at cgh too and I think that they are taking each patient on a case by case basis. You will be contacted if your chemo can't go ahead but I'll keep everything crossed that you will be able to have your carbo/Caelyx. Let me know xxxx
Thank you Sian. Hopefully I should be hearing something this week.My GP surgery said that Covid 19 patients are now being sent to Glos Hospital to free up space for oncology patients so lets hope that everyone will get their treatment soon.
Of course you are worth saving! , hang on in there and believe that this Virus will soon be in our past and we will all be back to some as-semblance of normality very soon. Take care x
I was sure I heard a report that they were going to use some private hospital facilities for treating cancer patients ? As ‘clean’ centres . Doesn’t sound as though anything happening ?
As much as I understand the reasoning behind the risk assessment of virus versus treatment it’s the fact there’s no choice for patients that seems wrong ?? I’m feeling really upset for you on reading this , it must feel like being abandoned. Maybe once ‘they ‘manage to get the testing issues sorted out and with proper PPE for the brilliant frontline staff , safe treatment centres can function. Of course you are worth saving , I hope you get some peace and some sun this weekend,
Thank you so much for your kind words Rankij. I've calmed down a bit now and think that it is probably the safest step to delay my chemo until there is some improvement in the Coronavirus crisis, but it certainly is not the best time to have cancer xxcc
Hello Welshandproud, so sorry for all you are going through, please know you are loved and you have ladies in this group for support. I will be praying for you and all will turn out just the way it’s meant to. God is with you at all times. Maybe He sees this delay is necessary for your health. Only He knows what tomorrow will bring. Please don’t worry He’s got this. God Bless 🙏🙏
I really appreciate your kind words and your prayers Tabor. Thank you so very much xxxx
Hi Sian
Sorry to hear about delays. I am expecting similar news. Just coming to end of three months "watch and wait". Pretty sure things are advancing but uncertain about blood tests going ahead.
I do find it hard to understand some of these policies. Whereas there is a chance we will contract the virus there is a certainty that growing cancer will continue to grow. While I respect our leadership I do think they have got a lot if things wrong. All we can do is enjoy the break from treatment- I have had several meltdowns but am managing some cooking and light gardening.
That's the spirit. It is difficult when we cannot get out to distract ourselves and meet up with friends and family. Cooking is good. I must order some seeds and do some planting 😁 xxx
Sorry to hear your news, but this sort of thing is happening more and more, unfortunately.
Things are becoming difficult here in London. I currently am walking around with 5 litres of fluid in my abdomen, but the hospital I attend for the cancer is not carrying out any treatment like draining or scans any more because of Covid19. They have, though, put me on a list of only 14 women for chemo - I've never had chemo before, and was told by the oncologist I have a reasonable chance of the chemo working quite well for some period of time between 6 months and 2 years. But in a phone conversation with the MacMillan nurse the next day, when I queried the wisdom of attending the hospital every 3 weeks for chemo and knocking my immune system out during this pandemic, she said, and I quote, I'd been offered chemo to 'spare me from a horrible death'.... apparently because they are unable drain the fluid off in the current circumstances. Seems to me if the cancer don't kill me, the chemo might and, with chemo, Covid19 is even more likely to...
Fortunately, despite the presence of Covid19 cases in there, my local hospice will drain the fluid - I am due there on Monday to get it done. But I really don't know what to do about the offer of chemo - seems churlish to refuse, but I know it will greatly increase my risk of dying from Covid19.... Thoughts, anyone?
Do you live in London or will you have to travel to visit the hospital? Are you able to drive to the hospital and so avoid public transport? Can you reach your chemo ward easily or do you have to use a lift to get there? These are just a few questions which would help me to decide whether to go ahead.
I live in west london, but Hammersmith hospital is a drive or tube/bus away. I live alone so no one can drive me there, I;d have to take cabs. The chemo suite does mean walking through corridors and up stairs... I also understand they are shifting any chemo over to Charing Cross hospital immediately after Easter, so after the first chemo, continuing chemo for me would mean travelling further in a cab there and back each time... wish I knew whether the offer of this chemo was made simply because they can't drain me and that would mean I die sooner, or because I'm too close to the end without it...
I think you need to discuss this with your oncologist. There must be a good reason why chemo has been offered but I can understand your reluctance to travel.
Well I'm coming to the last few months of life I think, though I don't feel ill,just got sky high CA125 and ascites. No question of discussion with the oncologist - like most hospitals, its impossible to get hold of anyone except the chemo nurse... I'll toss a coin I think....
Well, seems my mind's been made up for me- I went to the hospice, small suitcase, pillows and food supplies in hand (the food in there is dreadful) but after a consultant examined me, he said he was pretty sure there wasn't that much fluid, not enough to be drained anyway, that the swelling was mostly hernia and cancer. I could have an ultrasound scan maybe over the next couple of days to make sure, but he felt it really wasn't wise to stay there for long because they've got Covid19 in there, and getting an out patient appointment for one was likely to take weeks rather than days.. So he sent me home. suggesting I try chemo - basically, I either try chemo, or I'll be gone in 3-6 months... and the most awful thing was having to listen all day to this poor woman in the room next to me yelping with pain constantly, poor thing, it was dreadful. And then, as I passed her room later on, the door was ajar and I saw who it was - it was a woman I met at the hospice when I was there having lunch (that's how I know the food is dreadful) about 5 months ago who also had ovarian cancer, had had it years longer than me, had had loads of surgeries and chemotherapy, now clearly at the end stage. Dear lord... if I'd had a gun, I'd have put an end to her misery... I rather hope someone does that for me if I make it that far.
So, looks like I;m going to be trying chemo, as I've been 'lucky' enough to be offered it ... not that I particularly want to, but seems Covid 19 is forcing some very hard choices upon us all...and that;s only if I can find a cab to a from the hospital, seems most of the cab companies have closed, and I had trouble finding one to bring me home today... I figure if the cancer doesn't get me, Covid and chemo are very likely easier ways to go, if that's what's to be...
We're all in a right pickle, aren't we... its probably no comfort, but other people with other serious health issues are also unable to get help. I think if my sister has yet another heart attack now, well, I don't like to think about what might happen to her...
But in the end, its outside our control, isn't it, this pandemic and its attendant problems, so I guess, one way or another, we just have to try very hard to be philosophical about it - what will be, will be... we're really all 'casualties of war' I suppose, only without the bombs and bullets...
Miriam, I don’t know what I can say to offer any comfort or support. The situation seems awful and you must be in a state of bewilderment and disbelief. I will hope and pray that you are booked in for chemo and it offers you relief from your symptoms. Do you have family around? Sending you a hug and a prayer,
Well, yea,not much to be said on the comfort front, is there, but thanks for thinking about it! like everyone else who lives alone, or whose family does not live with them, though I have a son in London, not far away at all, self isolation/lockdown rules mean we cannot physically see or hug one another, so I'm gonna have to do this on my own, although the hospice staff say they will attend if I'm in trouble, if they can. But we're all in that boat where family is concerned aren't we... mothers and fathers not being able to see their offspring, grandparents not able to see their grandchildren, other than virtually, those who've lost loved ones to Covid19 not able to hold proper funerals... its all a nightmare for everyone. I do have an appointment to start chemo this Thursday - if I can find a way to get there and back - can't ask a neighbour or friend to do it, with the current lockdown going on... so we'll see how it pans out. I can;t honestly say I'm feeling bewilderment or disbelief - I'm a bit of a reality freak, too much so for many people, so its come as no surprise, but that doesn't make the choices any easier, does it...
I do rather wonder if I'll be able to make it up the three flights of stairs to my flat after I've had a chemo infusion... no idea what effect the chemo will have on me, never having had any before, how bad does one feel after an infusion? I;m only having carboplatin...fingers crossed it doesn;t make me deaf!
Yes so many people having to go through so much at this time. Let’s hope that you get your chemo over the next few weeks and Covid-19 will slow down. Then you can have more family and friends contact which will be comforting. Take care and thinking of you, sticky3006 x
Well, you've just pointed out a possible good reason to have chemo now, as its been offered - I might make it through Covid19 and be able to cook for my son and his friends again. That seems a wonderful dream currently...
Miriam I really don't know what to say. This is such a horrible situation. I wish I could come and give you a huge hug. Please look after yourself. Sending you lots of love xxxx Sian
Ah, thank you for the hugs... there is, of course, nothing anyone can say or do for people severely affected by what's going on. But I will keep on putting one foot in front of the other while I can - I've always believed, really, that when its a person's time, it happens through one means or another, so all we can do is our best, and not give in to the fear which, incidentally, is also a pandemic right now, it seems to me... this might sound awful, but really, its only death, isn't it, and if that's what happens, well, it's what happens, I've always been more concerned about quality of life and the manner of dying than the actual dying cos, after all, no one gets out of here alive, do they ... so, keep smiling, if possible and take one day at a time. If anything I'm rather annoyed that, having paid for my funeral 2 years ago, I am not likely to get what's been organised if I pop off during this pandemic any more than anyone else will, so that's £4k down the swanny, and very likely no lovely white coffin with pink calla lilies painted on it! And I won't be blond streaked either - wish I was grey so I could do a tint, but at nearly 70, I'm still not unfortunately, so already got dark roots about an inch long, nothing I can do about it, no hairdressers open, and chemo will rule out colouring anyway. But I'm looking forward to maybe sitting in the sun for a bit tomorrow if there's some around, cos I don't think you can do that when you're on chemo, can you... Hugs back to you 😊
OMG Miriam. I feel guilty for laughing at your last post but I just love the way you are describing how you have paid for your funeral and now the £4k may just go down the swanny and possibly no white coffin with the pink calla lilies, and the dark roots. Anyway, I hope you were able to sit in the sun. I really hope you are able to get the chemo and hope the side effects aren't too bad. Let's hope this dreaded COVID-19 disappears soon so everyone can carry on with some sort of normality. I am on this site on behalf of my mum. She is 83 and has had three loads of chemo and has been in remission since June 2017 and I am filled with dread at the thought of COVID-19 finishing her off. Keep putting one foot in front of the other. Sending virtual hugs. Jane XX❤️
Well I admire your mother's fortitude in having gone through so much chemo, I'm dreading mine ... and hope she gets through this blasted pandemic safely.
As for laughing at what I said, jolly good, I'm glad ... you;re not the only one, my palliative care nurse practically collapsed with laughter after I'd led off for five minutes on the subject of my funeral I'm not going to get (with a few fairly tame expletives) and my implication the only reason I'm trying chemo is to try to live long enough for this virus to be out of the way so I do get that funeral - if there's any relatives left to attend anyway, we're all knocking on now. She then spend the next few minutes apologising profusely... which was totally unnecessary as far I was concerned.
If you can't make people laugh and laugh yourself, well, we really are lost, aren't we, too much fear about these days... fingers crossed for your mum, and yes, I did catch a few rays - not enough, but some.
Hi Sian---Sorry if I repeat what you have read but I could not read all the responses and give you a timely one (you are loved!). First- I would be gutted too--not sure weighing getting the virus vs. cancer progression makes one more dangerous but I think the reasoning is one you may be able to live with, at least for awhile.
I didn't see you say you had any symptoms--are you in discomfort? That should also be weighed in on the decision if you ask me. I am in NY and I am on taxol (every other week, Avastin as well) and they are continuing. What is amazing is that my cancer center is basically empty when I go (usually 30 or 40 people in the waiting room) but they stopped guests from coming (which I approve of!) and they evidently sent as many patients as they could more locally to their homes for treatment, mileage wise. I guess that is something not possible where you are or they would do the same.
BUT--what I wanted to tell you is that when I knew I was progressing a year ago (it was April 2019 that my PARP stopped working, it took till December to start an effective treatment (I was on chemo that wasn't working, then a clinical trial that I felt had to be worse than dying AND it did not work, then hospital for week with complications, then Taxol (started December 6th). So from April to December--no real treatment to speak of, and the progression they saw on my scan after my third cycle, has shown I reacted quite well and rather quickly to the Taxol, then added Avastin (I think it is the taxol doing the hard lifting). In time, you will get treatment and my eight months of waiting (with some symptoms) will allow you to breath a bit easier while you see when the "curve gets flattened" to allow you back. I do not think it will be eight months or even close to that. If you are not having symptoms, maybe allowing yourself a certain amount of time to enjoy no treatment (before once again worrying that it's too long to wait)--maybe two months--where you can try to "enjoy" the time before treatment starts--and before you would begin making more demands to your oncologist about this, it may be the way to go. As if you didn't already have enough to worry about with Covid-19 everywhere. Hope you are hunkering down at home and have enough to occupy your mind and get mental breaks from worry.
Virtually holding your hand and hoping for you Sian.
Judy thank you so very much for your reply. You have certainly been through the mill with this horrible disease but I am so pleased that the taxol/ avastin have worked so well despite the delay. That really helps me and gives me hope.
Thank you so much for the virtual hand holding. It means a lot . Sending you lots of love xxxx
Like you I had a telephone appointment this week My cancer is getting bigger across my peritoneum but he says it is still only low volume. I did not go for my blood test as what is the point when nothing is going to be done at the moment and I am well aware that the figures will be rising. I am feeling well at the moment so I am scheduled for a six week appointment. Keep safe.
Thank you Avid. Now that I have had time to calm down a bit I think that it's probably safest to avoid hospitals at the moment. I'm pleased that you are feeling well. Sending you a big huge virtual hug xxxxx
Interestingly my daughter who is a doctor just sent me the abstract of an article showing that immunosuppression has not been a factor in severe Coronavirus and death whereas other conditions have such as diabetes, obesity, age, male sex, kidney disease etc.
So sorry Welshandproud. I know exactly how you feel. I was taken off Niraparib after 2 weeks as my platelets crashed to 9. I had to go in for 3 days for a transfusion. Like you I know my tumours are still growing. My appointment was deferred for 3 weeks but the oncologist phoned last Wednesday to organise blood tests at the hospital on Thursday. All very scary and well organised. My husband had to stay in the car. Everyone there was kept at a reasonable distance and the whole process was on the ground floor area to save going through the hospital. Had blood tests and weighing. Was home within the hour. The oncologist phoned later to say bloods were back up but advised to hold on for a few weeks before going back on to Nirapabib because of the added danger of going back for blood tests every week and being exposed to the virus. He’s going to phone me next week to see how I am and if I’ve made a decision. I don’t know what to do For the best. You don’t seem to have been given a choice which in the long run could be easier for you yet so worrying not having treatment. I’m told a few weeks won’t make any difference to life expectancy and Niraparib will not cure. However that’s not what we want to hear or believe is it! Maybe in a few weeks your hospital will have some sort of safety measures in place and your chemo can go ahead. I hope so. Perhaps the staff will have better safety equipment and even safety equipment for patients too. Things change daily.
I hope you’re feeling well. I’m not eating much and feeling quite poorly. 3 weeks is a long long time in our situation. I really feel for you
Oh Angela you have had such a horrible time with this horrendous disease. I'm so sorry but I really feel that you've made the right decision regarding the avoidance of the hospital at the present time. I hope things will peak soon and that hospitals will be less dangerous places. I hope you feel a bit better soon. Sending you lots of love xxxx
I'm a little undecided now after reading a post from Laura virtually advising us all to fight for treatment and not be swept under table. Difficult isn't it! What is really going on?
I hope you can get some answers and they do the right thing for you.
Hi Angela this is so hard, isn't it? It is so difficult to tell what the right thing is to do. I am lucky to have spoken to my oncologist again yesterday and she was able to reassure me that this is the right decision for me at the moment. If things change and my symptoms worsen then I am to get back in touch with her. I feel less written off now. Sending you a big virtual hug xxxxx
I was supposed to start weekly Taxol this week but have been told I cannot have it because of the risk with coronavirus. Bit confused cos told we could have waited anyway as I don’t have any symptoms. Why would I have it then? Have bought a wig in anticipation so all wigged up and nowhere to go
I think what;s happened is the oncology departments have reviewed all their patients in the light of Covid19 - those who can wait to start treatment, despite it being offered two or three weeks ago, are now being told to wait, presumably because the risks of catching Covid19 are greater than the risk of the cancer doing anything serious for a while. I'd certainly be waiting if I could...
Your dog looks just like mine. I cannot add a pic to someone else's post so I'll do so when I next post.
I am in the same boat, I cannot n even have a scan as they wouldn't treat me so apparently there's no point. I would also be facing my sixth line treatment but I only ever get three months before the cancer returns, right from my first line treatment. But since I tolerate the chemo well, for me that means six months of treatment plus three months, which is nine months and so things have gone on for four years. These nine months at a time and the four years, is very much worth it to me, but I am right at the bottom of the priority list. I think most ovarian cancer patients will be close to the bottom also unless there's a chance of a cure.
There's a chance I may get onto a trial so I am really really hoping as my hospital has stopped recruitment to clinical trials.
All the best and we must hope that things will not be too late. The initial advice I read was that cancer treatment would not be affected but somewhere someone has decided otherwise. Would like to find out who. Perhaps a mini-"Nightingale" hospital could be built in record quick time in each county which could specialise in chemo patients. Then it would need staffing of course, which may be the real drawback.
How are you? What's your dog called? Mine is Dylan and he is such a lovely cuddly dog. He has really cheered me up this weekend. I hope yours has been a comfort too. You certainly have been through the mill with this wretched disease and I hope that you manage to get on a trial when this whole pandemic is over. A mini Nightingale for us oncology patients sounds lovely. Sending you a big virtual hug xxxxx
His name is Rufus. We got the idea for the name when we visited Chartwell as Churchill had two dogs named Rufus. They were poodles but it still seemed a good name. Also it is Latin for red so seemed appropriate for his colouring.. He is not very disciplined but has an affectionate nature and boundless energy.
Rufus sounds gorgeous and a typical spaniel. He's got a great name too. We called ours Dylan after the wonderful Dylan Thomas. My daughter lives very close to Cwmdonkin park near Dylan's childhood home and it's Dylan's favourite park. I look forward to going there again when this whole pandemic is over.
Rufus sounds like a typical spaniel. What they lack in discipline they more than make up for in affection and boundless energy. Gorgeous dogs. Give Rufus a little tickle behind the ears from me xxx
That’s very, very tough. You’ve every right to feel upset. They are trying to keep you safe because you are absolutely worth saving. They’ve weighed up all the pros and cons & made the decision they, as professionals, know is best for you. It’s worrying for you but they must be sure that a month’s delay won’t make an appreciable difference. Try to keep strong in the meantime. Have lots of distractions and be good to yourself.
Thank you Ann. That's very kind. Yes I'm coming round to the idea that it's the best decision and that the professionals have my best interests at heart. It's June hard when you have to face a delay like this. Sending you a big huge virtual hug xxxxx
This is really unfair to you! I hope you can get treated soon and this disaster caused by COVID_19 may end soon. Take care of yourself and keep in touch with your doctor and consult with him that what can you do to stop the progression of cancer. Maybe your doctor can suggest you some option to deal with the pain or disease.
Thanks Lyana. I spoke to my consultant again this afternoon and she has prescribed a hormonal treatment for me. The last one didn't work for me but I'm happy to give this one a go. Sending you a big virtual hug xxxxx
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Totally Gutted!!
Platinum resistant - paclitaxel planned
Carboplatin alternatives 
