CANCER PATIENTS IN LIMBO

I found this article very disturbing, but it does explain the telephone appointments and lack of clinics.

itv.com/news/2020-03-26/cor...

[LittleSan]

One of my friends has been told that her weekly chemo is likely to get suspended only a third of the way through and resumed when all this is over. Another has been told that she may only have 2 doses after her op and the last one cancelled. So scary but we can only hope that it brings new ways of treating people that brings evidence based benefits. Who knows?

Big virtual hugs to all in these uncertain times. 💐💐😘😘

[dexta2005]

Such uncertain times. Its been 5 weeks since my last chemo and I was due for surgery a week ago, but due to low bloods and now a member of the household with a cough, I am isolated for the next week or so. So another couple of weeks before anything happens. But to be honest, I would rather stay in my room (I've got everything I need) than go into hospital and put extra strain on the fantastic staff and possibly catch the virus. I am doing a strict diet and a lot of reading and research and feel really well and positive. So yes it is worrying, but we all need to look after ourselves. Stay safe. x.

[27-359]

Yes, I saw this too. I am waiting to hear what we are going to do about my recurrance, but I am afraid the answer will be .....nothing!

[Hidden in reply to 27-359]

After I finished front line my CA125 immediately started rising - after 3 months they gave me a CT scan my CA at that point was 1080 nothing untoward showed up, I felt fine and was out and about enjoying life. It was 6 months before I started 2nd line treatment, sometimes "doing nothing" is also acceptable, as long as you are not feeling really ill. x

[Coldethyl]

I don’t just think it is resources or lack of - oncologists are being asked to weigh up the risks and benefits of treatment at this current time - there’s little point of killing you now if you caught the virus while on chemo if they believe that they can safely delay treatment for a few weeks or months -a friend with advanced bowel cancer has had her chemo stopped for now because her consultant believes the risk of progression in the next few months is less than the risk of death were she to catch it while immunocompromised- that’s not ri say that some won’t die sooner without treatment but it’s a juggling act to put that into the future and not in next few months - and as Little san says , it will be interesting to see what evidence comes out of this situation re optimum timings and cycles etc as cycle number isn’t set in stone really x

[Everhope in reply to Coldethyl]

You are so right about this, these are not normal times. It is extremely scarey, in fact terrifying to contemplate the future both personal and nationally. My hope, and prayers at the moment is to stay away from any hospital. I feel our oncologists are having to make really tough decisions about treatment v hospital exposure. My heart goes out to the NHS staff, particularly those on the front line. The awful fact is that every country in the world has a shortage of ventilators as well as a shortage of ITU beds, the effect on the doctors, many very young, of daily decisions they have to make will be life changing for them as well as their patients.

I agree absolutely with Lynn1987 these are disturbing times but also love little san’s post & Coldethyl sums it up for me.

Try & stay well and somehow take each day as it comes.

xxxxxx

[Coldethyl in reply to Everhope]

We live on a farm and had a dairy herd at the time of the foot and mouth outbreak in 2001 - I remember that much of the testing and culling work locally was carried out by the less senior vets at our practice , some newly qualified Afterwards when life settled back to normal , three left veterinary medicine because they couldn’t forget what had happened to them - I suspect as you rightly point out , it will be the fans for many medical staff in the months and years to come

[OvacomeSupport Partner My Ovacome Team]

Hello lyn1987

These are rapidly changing times and people are experiencing alterations to their care, such as more appointments by telephone rather than in person. Decisions are being made for each person to help to keep them safe based on their own individual circumstances at this moment in time at their local service.

We're here to support you, so please get in touch with our Support Service if there's anything that we can help with or if you'd like to talk anything through.

Best wishes

Julia (Support Services Officer)

[delia2]

That article is horrifying. They talk about Italy having to decide who gets a ventilator and giving it to the younger person. I don’t understand how it’s justified to let cancer patients go without treatment when it could make a difference between life and death. I’m in the US and I go to a hospital that only treats cancer though they’re connected to a general hospital. They are doing all phone appointments but I’m having my CT scan on Monday and chemo is continuing. In our system it’s all the ordinary doctors who aren’t available. There’s no help for non life threatening problems. My husband can’t walk because of tendinitis in his foot that’s been bad for three and a half months but he can’t get anyone for that. Can you all contact your MPs and complain about the cancer policies?

[bamboo89 in reply to delia2]

I don't think there's much point in complaining about the situation cancer patients are finding themselves in - many doctors here are having to pitch in to help with Covid19 patients, leaving their own specialisms unattended. This is a crisis, a sort of war situation, and in a crisis, its that which must get the energy and input - healthy, fit and often younger people who are otherwise at risk of dying from Covid19 must and should be put first, in my book. I don;t like the situation I'm in, obviously, but I can see there are greater priorities than what happens to me as someone with cancer; frankly, I wish I was young enough, fit enough and well enough to volunteer to help...

The stark reality is, we will get through this as individuals or we won't, we can only do our best to keep ourselves going in whatever way we can in hopes things will return to normality sooner rather than later. I think daily about the awful situation medics are finding themselves in - if I was religious, I'd probably say I pray for them; they are on the front line, putting themselves at risk all the time, often without the correct protective clothing, getting sick themselves and having to take some very, very hard decisions. I'm sure many of them will suffer post traumatic stress when all this is over. My heart goes out to them....

Miriam

[Everhope in reply to bamboo89]

You have so clearly said exactly how I feel, which is not to say I am not petrified for myself, particularly when I wake in the middle of the night, as I live alone. My daughter works for the NHS, which is yet another cause of worry. I so miss seeing her & the family. I guess there are thousands & thousands in the same situation.

Xx

[bamboo89 in reply to Everhope]

I too live alone, but what keeps me awake at night is worrying for my son in case he gets it and is seriously affected, and fretting about not being able to help out the local community or the health service, more than anything. Whether I die or not doesn't register to high on the list, though I do fret about whether there'll be any help to assist my passing if that's what's to be. I feel for you, having a daughter who works for the NHS - I did the applause thing the other night, but all the time, I was aware of anger and impotence at the fact that what I'd rather be able to do is provide all the PPC the health workers need, which would have been far more useful to them... At the moment many of them are on the front line without armour...

Dr. John Campbell on youtube posted a video sent by a doctor from Madrid yesterday - totally heartbreaking, he was so distressed as what's happening there... they are far worse off than we are at the moment...

Of course, we know, don't we, that being angry or petrified or worried makes no difference to a positive outcome and may even make us ill, so we know its best not to indulge it... but it's hard not to. Keep your pecker up, I wish your daughter well and please tell her she has my eternal gratitude. I, too, miss seeing my son terribly...

Miriam

[dexta2005]

I have just heard from the hospital that my planned operation has now been cancelled until after my last chemo (2 more to go). I am relieved. I would rather have a day of chemo than 5-7 days as a patient with the threat of cv. The fantastic NHS staff have more than enough to contend with at the moment. Hopefully in 2-3 months time, things will improve. Stay Safe. x.

[Di16]

My scan, due on Tuesday, is cancelled, & my appointment postponed for 2 months. Di

[SUE7777]

It is very disturbing, I'm on first line treatment and have been told my last chemo session is cancelled and my next one maybe also the immunatherapy I was supposed to having is postponed. I'm writing to Downing Street, my local MP and 5 Newspapers today. Don't they understand Cancer also kills and stopping chemo and operations is a disaster. We also have the worst survival rates in the Western World. I'm petrified!

[Hidden in reply to SUE7777]

I am sorry you find yourself in this horrendous predicament. Have you spoken to your CNS about your concerns? Ask her - Is your CA125 stable preferably under 35, If yes then is she happy for you to go on "watch and wait"

My first line treatment got my CA down to 38, however I did also have a CTscan which was NED so went on "watch and wait" for 6 months.

Good Luck x

[SUE7777 in reply to Hidden]

Hi Lyn, Thanks for getting back to me. My CA125 was 10 after chemo treatment 3 and I had 4 yesterday. The CA125 reading is particular to the person and only an indicator, also the first time you have chemo is when it works best. Unfortunately my cancer doesn't show up on any scans so CA125 is the only indicator. I realise the first chemo treatments are the most important ones but the later ones can mop up cancer that doesn't show up. I was originally told there would be 6 sessions so to have this reduced to 4 is awful and very upsetting. These politicions need to understand Coronavirus is not the only killer.

Thank you for your help and God Bless. Sue xx

[Hidden in reply to SUE7777]

Can I suggest you "post" your thoughts as a message to all on here. You will receive lots of support from ladies in a similar position to yourself. x

[SUE7777 in reply to Hidden]

Thank you will work out how to do a post, this will be my first. xx

[Hidden in reply to SUE7777]

On the home page there is a “write” box on the right x

[SUE7777 in reply to Hidden]

Thanks, I have posted an article, but not much response yet. xx

[TarbonNZ]

That article makes you feel quite sick. N.Z . has been in total lockdown since Wednesday, and this will go on for four weeks minimum. The whole country is at home apart From key areas such as Supermarkets, chemists etc. It all feels surreal. At supermarkets there are restrictions on how many are allowed in side, and you have to queue up outside 2 metres apart. It works on one in, one out. So far most of our cases are travel related, but we have got a few community transmissions, and now a couple of clusters. We have not had a death yet, but their are now cases in intensive care. It is all horrible. They are saying that cancer operations will continue, as well as treatment, however all other elective surgery has been cancelled. Consultations are by phone. I just pray we all come out of this ok. Take care everyone. Therese.

[Hidden in reply to TarbonNZ]

Stay safe at home. x

[Maxjor]

Scary article Lynn. Thank you for sharing. A bit different over the pond, at least at Memorial Sloan Kettering but I went yesterday for treatment and was the only one in their vast waiting room (I can usually count at least thirty or forty people there). My oncologist "met me" by phone only, even though he was in the building. He is being told this is how he will meet with his patients (and here, they are trying to figure out how to get reimbursed for those calls as private insurance companies do not have pricing set up for this kind of tele-visit). This was also the first time they forbid anyone to accompany the patients which was strange as well--first time for me (did not mind one bit). My oncologist said he has had a couple of patients get the virus and he insists they stay home if at all possible (breathing not an issue) as he thinks it is the safest place for a cancer patient in treatment, or even not in treatment. I worry constantly with the spread here in New York City, but I worry more for you and the ladies in the UK who are being told no treatment for now. Let's hope that curve gets flattened very soon. Hugs to you, and all. Judy

[delia2 in reply to Maxjor]

Judy, I really worry about everyone in New York so I hope you can maintain your social distancing and keep away from the virus. With such a dense population it seems really challenging. At least Andrew Cuomo is doing everything possible. I wish he were running the country! I’m on Cape Cod and 35% of the population is over 65 and we have very little hospital capacity. So far it’s okay. Keep well!

[Maxjor in reply to delia2]

Thanks Delia! Except for a daily long walk (practicing social distancing) I stay in. My doc says fine. But mostly in the apt. Worries me where you are with little hospital capacity but if you even got an inkling you might need one, hope you could get to Boston (Dana Farber maybe). Wishing you all the best and stay safe! Ox

[bamboo89]

As I understand it, tough decisions on cancer treatment are having to be taken for obvious reasons, but not all cancer treatment (so far) is being halted. Wherever possible, treatment is being delayed or put on hold on a case by case basis, but for some, treatment may still be offered, presumably with a caveat about the increased mortality risk from Covid19 if you are under treatment.

I am due to see the Oncologist next Tuesday following a CT scan two weeks ago; initially, I had a text saying not to come in, they would ring me, but that was followed by a phone call a day later to say I should come in. They apparently sent out a blanket text saying don't come in, then selected certain patients they feel they must see and contacted those individually - I appear to be one of those, presumably because of my significantly increased ascites. Quite what they are going to suggest I don't yet know; I'm probably at the point where its now or never for chemotherapy, but whether that means they will offer it, I'm not sure; they may just try to arrange for me to be drained, which at least would be a relief, though as things get worse over the next 2-3 weeks with Covid 19, I can see even carrying out draining might not be possible.

I am pragmatic and philosophical about the situation; we are at war, its just there are no obvious explosions, bombs and bullets flying about. This enemy is invisible, but its a war nonetheless, and in a war, there are inevitably all sorts of casualties (some of whom will be medical workers), but also many survivors, including some 'miracle 'survivors. And many of us will be in the survivor group...

I wish everybody well, and will just say, as far as possible, bear in mind that life is always precarious (whether we realise it or not) take care, keep calm, carry on and try to laugh as often as possible, because, in the end, humour, hope and love are all we have😊

[Natsmb]

It's very frustrating. I have a sense of compassion for the health care system being overwhelmed- it's so hard on them. On the other hand, postponing treatment for cancer patients put into perspective pretty much seems like a flat statement declaring that their lives are of less value than someone else's.