I have a question. Is everyone on chemo self isolating?
I am due to start chemo again in the next month or so, and as I live alone, the thought of being confined to home for six months, while coping with chemo induced symptoms on my own is really depressing me.
I have avoided all family and friends for the last seven weeks although I have been getting out for a daily walk. I am desperate to see my family and talk to someone face to face. A thirty minutes Skype call is not the same!
I know that sitting alone, feeling ill and isolated is not something I can deal with for that length of time, and am wondering if the cure (optimistically) is worse than the disease.
Jenny
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Hi Jenny I started chemo -first recurrence 2 weeks ago and yes I'm sort of self isolating. I live with my hubby so I am in a different situation to you and we are now having on line shopping and we don't see anyone at all. We sit in the garden but I do try and get out for a Walk for 30 mins a day but go really early in the morning so not many people - hardly anyone about. If I see someone coming towards me I cross over the road so I don't get anywhere near anyone. I have a mother in a home whose got dementia although thankfully she still knows who I am and I ring her everyday the home pass the phone to her and put it in speaker so e can hear me. It must be so stressful for you being on your own and I can sympathize with you as it's a difficult time already without having the stress of chemo but then what choice do we have if we want to stay safe.??
Yes. I know what I should do but.......I am used to a busy social life, which I have taken on as I need to have regular company. I have kept to myself so far, as I knew self isolating would come to an end. Now that I need to go back on chemo, I can't see an end to it.
Jenny just a thought....could you not go and see your family and friends still BUT keep the 2 metre distance. Or more The summer is on the way and perhaps you could sit in the garden with family and friends but keep a good social distance away. If it's going to have an affect on your mental well-being and it sounds like it's going to then I would defo consider this....
I would happily do that, it's just that the guidance is to STAY AT HOME! I think I I know secretly that I won't be able to abide by this, so will be doing as you suggest. I suppose really, I hope that I am not the only one who expects to not be keeping strictly to the rule.
Also thinking once we have the app on our phones our misdemeanors will become obvious!
Hi Jenny, I am on my own and have been shielding since the lockdown began as I have been on chemo since January, the only time I go out is for a blood test and chemo once every 3 weeks. You just have to understand you have compromised immune system and you are taking a hell of a risk and also compromising the NHS if you become ill. You don't have to tell me how difficult it is and I am surrounded by people who are not sticking to the rules making it more difficult. Best not to dwell on it too much and take each day as it comes. Take care and be careful. Sue xx
Hi there, yes I am also contemplating this as due to get on chemo next week.
I also thought about the garden idea as a way to see family in person but at a distance. The only thing is that when we are feeling really ill or bed bound... this isn’t going to help. My understanding is that if I were alone I could have carer support... presumably in PPE.. so it might be worth talking to the chemo unit about your circumstances and any help you might need xx
Hi. I wasn't offered support last time I had chemo, though of course family were able to visit. The hospital asked if I had help at home but certainly didn't offer any alternative to getting through it on my own.
Hi Jenny I’m on chemo for reoccurrence and while I mostly stay at home and don’t go to shops we do go for walks keeping out of peoples way. We also talk to friends who drop off food staying 2 metres apart. I did speak to my oncologist about the risks and she said if you are otherwise healthy (ie no underlying health issues) the anecdotal evidence is that people on chemo don’t do worse than anyone else with C19. So I do think it’s fair to consider your mental health in this situation and get a balance. Have you talked to your team? Wishing you well on the chemo. Jane x
This may well be true (George Alegiea has had c19 whilst on chemo) but what isn’t stated is that if you have relapsed cancer you are low priority should you need ventilation with c19... so our risk is higher because they won’t offer more than palliative care.
The latest guidance is that those shielding should continue until 30th June & then I assume there'll be new rules so the 'stay home' message might not be for long.
I've been strictly shielding but have my husband at home & he started shielding too so that he could take care of me while I was in chemo. We haven't left our property & have had no visitors, but I couldn't have got through this on my own. I think you need to make your own decision based on the balance of risk. I would make the most of the new general guidance & meet up with friends & family (outside!) now before your chemo starts. Maybe during that you can identify a small number of people who will be strictly following social distancing, hand washing etc & are happy to wear a face mask - these can be your visitors during chemo? My parents have carers who visit every day and these are the things the carers do.
Yes. It's the getting through chemo without a hug and a cup of tea which will be so hard. I think I will just have to take it as it comes. I might feel so aweful that I don't want to see anyone!
Dear Jenny . Most of us have thought the treatment feels worse than the disease, and of course you’ll feel lonely at times. Like you I’m very sociable and this enforced lockdown is very hard . There are gloomy days but mostly I’ve found quite a few pluses , and with a little balcony outside leading to the car park, it’s possible to have a coffee at either end (2 m apart)with a couple of friends recently . Listening to music helps, reading my weekly mags, phoning , Skype, zoom , FaceTime are not the same as face to face conversations and hugs etc and I miss my family dreadfully but overall we single householders can manage ! During chemo there are lots of periods of rest when it’s peaceful to not have to respond or be bright I recall. Have you got audio books ? They might be helpful too. Being shielded I guess you will have groceries delivered ? Each week more and more firms seem to be delivering and I had plants for my pots and baskets delivered by a nice guy who chatted from a distance! It was so good! You have a lot of friends and acquaintances I presume who will hopefully keep in touch and call you often I hope.
These days will pass , you’ll probably sleep more too which is good. Don’t feel alone : we are all here and with you in spirit.
I’m on my 2nd dose of Caelyx , I’ve had my husband working from home fortunately but I have had my ex come to visit as we are all friends and I know he is not going out except to visit me and the occasional grocery shop. I’ve had another friend over occasionally. I went to the shops this weekend and just didn’t touch anything and watched my distance. I’m in Queensland and we have very few active cases and almost no new ones so I feel pretty safe. I think as long as anyone who you would see is also careful and sure they are healthy you could maybe meet in the garden and keep your distance if you’re worried. It’s not good to feel depressed and alone. Just be cautious and mindful.
Hi Jenny, I sympathise. I also live alone and will be starting 4th line chemo quite soon. I was hit hardest at the beginning of lockdown when I was one of the first to receive the "highly vulnerable" letter. I wasn't thinking of myself as specially vulnerable, over 70 but haven't been in treatment since last July, no other conditions, and was focused at the time on getting super fit for a ski holiday followed by a sailing holiday in April -- i.e., fitting in lots of good times before the inevitable next lot of treatment. The sudden prospect of 12 weeks locked in my home, with chemo starting before the end of the 12 weeks was TOO MUCH!
My CNS strongly advised that I get out for walks (despite the instructions), so I've been driving to a nearby common where it's quite easy to avoid other people. Better than nothing but it doesn't replace the lovely sociable hikes with my walking group, ending up at the pub or cafe!
The prospect of adding chemo to the present situation is daunting I quite agree. I'm trying to concentrate on the things I CAN control (not so many!) and take things one day or one step at a time. It doesn't always work, of course. We've got through a lot of challenges already and we'll find a way to rise to this one.
Thanks for replying Gill. You are right, it is too easy to feel that we are alone in feeling like this. I feel better talking to others going through the same thing, and will try and give thanks for the things I can do.
I live alone, am on chemo and isolating, apart from going for treatments. If you haven't signed up with your local hospice (charity or council run) they will support you through your chemo, though that is obviously much reduced, down to 'if you're in trouble and need advice/visit/medical check to see if you need to be in hospital'. The only person I've seen in my home was the palliative care nurse last week- she was fully kitted up and I had to wear a mask too.
No, not the hospital, I rang and asked my GP about it, well, actually it was the senior nurse practitioner. This was over two years ago, after my surgery, when I had more or less decided I didn't want chemo and wanted to check out what palliative care was available before making a final decision (I was Stage 4b at diagnosis with two forms of ovarian cancer, one of them 'very aggressive' and was almost 68 at the time). She gave me the contact details and I rang them; I think the nurse probably had some kind of contact with them about it in the background as well, because within a couple of weeks or so, the Palliative Care nurse came out to see me. It was she who told me they would support me through chemotherapy if I chose that route. I remember being really surprised and a bit shocked that the hospital hadn't told me that - it was one of the factors I considered when I was deciding whether to have chemo or not, the fact I'd be doing it entirely alone with the only recourse being the emergency oncology number. When I asked the hospital why they hadn't told me, the Macmillan nurse just looked a bit embarrassed and didn't say much - I concluded they don't mention it to cancer patients because of that word 'palliative' which strikes fear into the hearts of people I think. I suppose if the hospital did mention it, many people would think it meant they were dying imminently, because that's how the service is seen. I think my oncology hospital does have a palliative service, but its not exactly local to me, and they've never mentioned it to me either.
Clearly I haven't died yet, but was very much on the way there a couple of months back, and have now decided to have some carboplatin (single treatment only) to fob off the inevitable for long enough that there's a chance I will get that prepaid funeral I stumped up £4k for two years ago, which certainly won't be available currently cos of Covid19. That and the fact that the hospital was not prepared to drain off my ascites back in early April due to Covid 19, offering only chemo instead, and I was pretty uncomfortable. But my palliative care nurse rings regularly and was visiting about every 6 weeks for the last two years, and has seen me twice at home since I started chemo (kitted up with protective gear). I find it very supportive...
I did also check my local area to see what was available in terms of hospice care - many areas have charity hospices who supply the service, but where I live, there's no charities, only the local authority/local hospital palliative service, so you might use Mr. Google to check what there is in your area, or ask your GP surgery.
I would suggest you have that conversation now - don't wait, because services are over stretched for obvious reasons, and if/when you do need some support/help, you may not get it quickly enough. Using the palliative care service does NOT mean you are going to die any time soon... I'm a prime example, its been 2 years and 5 months since I contacted them, and I'm still well... fighting cancer, yes, but still well. apart from chemo making me ill.
I didn’t know you had re occurred, so sorry that is the case.
I haven’t had a cuddle from my grandkids since 2 weeks before the lockdown because one of them got the virus and I had been with him, so self isolated.
I think we are all missing cuddles, but my husband is undergoing chemo at the moment and we meet occasionally with friends and family on our driveway, self distancing (husband included), only a couple at a time, no contact.
I hate face time and Skype, only do it if no choice, but seeing people in person is good.
You should be able to get a priority slot for shopping, if you go on the government website, we do, a weekly one, supermarket of choice.
It’s not sad, I think company is very important, apparently this virus is very rarely transferred by kids, but I’m not taking any chances.
This is all mind numbingly boring now, I would just love to go and do something trivial like clothes shopping (in a shop), or go for lunch with friends, but we will get there.
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