Isolation

Hi , I to am having to shield myself for 12 weeks being in an extremely vulnerable category, I started this nearly two weeks ago when my letter arrived (I’m on immunotherapy drug Pembrolizumab). I used to spend quite a bit of my time going on walks and now I’m only allowed in the garden. I’m not familiar with the drug you’re  on as mine is a different cancer. I did find a Macmillan link that talks about your drug being a hormonal therapy drug. I’ve put the link below 

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/letrozole.

I’m not sure it matters which group your drug is in unless you think the letter was sent in error, your GP would be able to tell you, or you could check with other breast cancer patients in that group to see what their experience is. I’m glad your going to get food parcels that will help with not going out for food, there also seem to be Volunteers in many areas who can help out with various things like as you say prescription deliveries so if there is anything that you need there seem to be people who are happy to help. 

Next week I’m due an oncology appointment and that will be done by telephone, I’ve already had my bloods taken at a nearer GP surgery instead of at the hospital, and been contacted about a change of venue for my Immunotherapy next week which I get by IV. If sounds like your drugs are tablets so you must be happy that they will probably get those to you without having to attend a hospital. 

I get text messages nearly everyday form the NHS that give links to NHS information that should make this easier for us, a few days ago I had a look at the exercise link, and found one doing an aerobics exercise session which was really good, I joined in as I am really missing my walks. It’s good that you are able to connect with family by face time. I do that with my 2 grown up daughters as one lives in Japan and the other about 240 miles away. My friends that I usually play walking netball with set up a WhatsApp group to keep in touch and share videos of themselves keeping active as well as an array of jokes, a lot of them live on their own. You have the company of this site to talk to others affected by cancer and the Macmillan support line if you want to talk to any Macmillan staff about things affecting you, and the pink banner at the top of the Macmillan pages give you the latest on the corona virus. My husband is usually an avid news watcher but there’s only so much doom and gloom you can take so we are limiting ourselves to how much news we watch.

Enjoy the time with you daughter, and use the Internet for your friends, take any help offered and if you need anything else ask for it, and keep as safe as you can, and plan your day so that your occupied and not worrying too much.

Best wishes

Hi KTat home Thank you for your advice / help and understanding 

E x

I hope things get easier for you, please let me know how you get on, or if you need to off load anything. We all support each other here.

Hello Betsy001,

I'm sorry to hear that you find yourself in this position.  I am registered on the Gov.UK website as extremely vulnerable although I have yet to get my letter from them.  Strangely ASDA have been quicker off the mark and I have received a message offering me priority deliveries of my groceries.

I don't know what the advice is in Scotland but assume it is similar to the advice given here in England.  I usually live with my wife and son but at the moment we also have my mother in law staying with us.  She is also taking letrozole and so far as I am aware this does not put her into the extremely vulnerable category.  However, her treatment was several years ago and it may be that as yours was more recent the effects are still continuing.  I did do a bit of research in looking into this and although I don't think letrozole is on the list I think that the alternative tamoxifen is.  However, on the Breast Cancer Now website a nurse was saying on 30th March that Tamoxifen wasn't so it is all a bit confusing.  You might want to contact your GP to check although when I talked to mine I had to explain to him why I fell into this group.  The advice on the Scottish government website says that if you do not believe you fall into this group to contact your local authority.  The link to the gov.scot website is Here if you want to see the information they have given.

It is not possible for me to comply with all the guidance as there is no way I can sleep on my own as we don't have the space.  We also only have one bathroom and kitchen and share these.  I have been driving my wife to the supermarket and sitting in the car with the windows up whilst I wait for her and I have gone out for a short 15 minute walk occasionally (about once a week) as I live in a quiet area and have no difficulty in staying more than two meters away from anyone else.  I know of others who have responsibilities for animals and they have to go out to care for them.

These measures are meant to not only protect us but also protect the NHS by ensuring that there are less people in hospital needing the critical care beds but I do think you need to balance the risks.  I am often nearer to other people sitting in my garden than I am walking down the road.  I recently had a vitamin d deficiency so need to spend some time in the daylight for my physical health as well as for my mental health.  I think that you have to balance the risks with the benefits.

There are indeed benefits to being in this group.  You can get priority delivery slots with an supermarket if you can order online or if you cannot the local authority can arrange for you to get a food box.  Any medication that you require can be delivered to your door rather than having to arrange for someone to pick it up.  details are on the website page that I put the link for.

You might want to consider either suggesting that your parents register or if they cannot do then you might want to do that for them.  As I said I had been missed off the initial list and had to refer myself for registration.  The government then go back to my records, verify that I am indeed extremely vulnerable and added my details to the list.  The same may need to happen for your parents.

I have a 14 year old son and to be honest I don't think it has made a significant impact on his social life.  He does not attend school now but all his schoolwork is available online, we just have to motivate him.  He spends a lot of time online talking to his friends through the games which is what he used to do before.  We almost have to kick him outside to get him to get some fresh air or exercise.

I'm sorry that this e mail has been a bit disjointed but I have been looking things up as I have been typing trying to work out the differences between the English and Scottish systems for dealing with this.  I hope that at least some of this has been helpful and that you are feeling a bit more settled now.

Wishing you all the best,

Gragon x