*** March BC Chemo Club 2020 ***

Hi ,

The advice just says that we are more at risk of serious illness with coronavirus if we are having or have had chemo therapy in the last 3 months. I suppose our immunity will continue to get stronger in that time. My oncologist said four weeks initially but I suppose we are dealing with something unknown with the coronavirus.  So yes better be safe even though it's so disappointing. Hope you manage to find something fun to do instead.  Take care. Xxx

Hi Louise

I'm ok 10 months after diagnosis ( scary) and op , 12 weeks since chemo finished . 4 Herceptin done 14 to go .heart echo April.next Bisphosphonate in may  our life as we know it .

Just as well we have sense of humour and Calendar app on phones. 

I do feel out of chemo cloud hair growing unfair that facial hairs seems to grow faster lol

Still get tired tho fatigue lessened . I get a few minor SE with Herceptin injection but not much .hoping they'll get less as my body gets used to it .

Just read info on cancer research site re corona apparently double whammy for at risk chemo in last three months then Herceptin lowering immune system ,plus classed elderly ( bit much that I obviously disagree ) 

last bloods still showed high neuts so hopefully they will stay that way . 

Im due to see Onco and no5 on the 30th we'll see if I get to see Onco .hospital have changed hubbys app on Monday to a phone consultation .

we went shopping this morning didn't need any but Aldi stocking shelves with loo paper and B&M had plenty .

What I did manage to find was disposable vinyl gloves in b & m I've been using them throughout chemo saves on soap and gel . It's so much easier when dealing with raw food ,and cleaning .

Think we going over to Cumbria for a few days . Have some quiet time 

Hard with Corona but try to get a treat before op although it's a doddle after chemo 

take care 

margaret x

Hi West End Girl

Like you, I am having immunotherapy (Herceptin and Perjeta infusions three-weekly until November) and have been getting my life back to normal.  I returned to work full-time a month ago, which has gone very well and I have been going to my radiotherapy sessions by train after work (still 6 treatments to do).  My oncology treatment team were happy with all of this, including the fact that some aspects of my job involve working in GP surgeries.  When I was on chemo, I was signed off from work completely due to the infection risk, but like you I was told that I didn’t need to take the same stringent precautions when on immunotherapy due to the lesser impact on the immune system. 

I went for my latest immunotherapy infusions on Thursday, and was a bit surprised to find that our oncology dept is in virtual lockdown due to the Coronavirus threat (although we only have 1 documented case locally).  We had to complete a questionnaire before entering the dept, then had our temperatures checked and had to answer more questions about any possible symptoms before being let in to the treatment room.  The Cancer Care Centre is also blocked off from the rest of the hospital so people can’t walk through it, but have to report to reception.  I was given a six-page (NHS England) leaflet about cancer and the Coronavirus, which states that people on immunotherapy, and those having had chemo in the past 3 months, fall into the high risk category. My treatment nurse also checked that I knew that this applied to me in relation to the Herceptin/Perjeta infusions.  The leaflet said it is necessary for people in the high risk category to avoid crowded places, so I asked the nurse whether I should go to my radiotherapy treatment that evening by public transport (short train journey train between two busy city stations, plus two buses).  She went to check with the consultant, who advised that I should not, and should change to travelling on the patient minibus from now on. 

I did go on the minibus yesterday, which took far longer but obviously is much less risky in terms of infection as there were only a few people on it.  Strangely enough, the large hospital where I have radiotherapy was not in any sort of lockdown, with the only change being that we were told to wash our hands before treatment. They didn’t give us any other information.  Perhaps this is because radiotherapy does not put people in the higher risk category, but it is a huge regional cancer care centre and several people were on chemo drips while waiting for their radiotherapy, so it was a bit confusing that the approach was different.

My employer has been proactive in thinking about risks to staff, and did an individual risk assessment for me (and other people with ongoing conditions/treatments) last week.  I have been told to work from home on my laptop from next week and not to travel by train or attend public-facing events.  All of our work in GP surgeries - even for staff not at high risk - has been suspended for three months and converted to a phone support service.  There are several staff on various cancer treatments in my local office, and I understand that my employer also took advice from Macmillan about what risks we should avoid.  We work with a high risk group of clients (older people), so obviously that makes a difference too.

It is frustrating not to be able to continue as normal, but I have no choice but to take the advice given - after chemo, I guess we are pretty used anyway to keeping away from infections and isolating ourselves. Everyone in my organisation nationwide was actually asked to work from home yesterday so that our IT systems could be tested for large-scale remote working, so working practices may be changing for everyone anyway. 

I hope that you can get some advice soon about your own situation - take care, and stay safe.

Blackcat20 xx

Hi Blackcat20 thank you for the information. I suspect that maybe our immune systems are stronger now than with chemo and the advice given to us at the time about immunotherapy was right, I certainly feel well enough.But in these unprecedented times where nobody really knows about this virus, they perhaps need to give us this advice to be extra careful. I think I would probably be doing that anyway with all you hear on the news .....and there probably won't be any crowded places to go to anyway soon! I'm due to start radiotherapy on Wednesday and it is a separate building at my hospital, so I hope they continue to operate as normal. Hope you're still doing ok with yours. Stay well x

Hi everyone 

Just back from chemotherapy unit getting check up and blood tests, everything as normal just everyone reminded to use hand gel and nurses facing sideways whilst doing BP and bloods so no one breathes directly on each other. Got given the One Cancer Voice advice handout, posters up stating max. one accompanying visitor per chemotherapy patient to reduce amount of people in department.

Other than that keep calm and chemo on... Wishing all a good weekend with minimal side effects xx

Hi re your carvey,we were advised not to use them as you don't know who has coughed,spluttered or handled the food.Also how long it has been standing.Not advisable with the New virus,

Hi Margaret

12 weeks already since you're chemotherapy wow that has gone quick. I have just invested in disposable gloves as hands burnt from chemo and all this extra washing they are raw.

As for loo rolls well! what can I say. My hubby went on a search for some today and only one shop had 2 packs left.it is crazy.

Enjoy Cumbria and relax. Not sure if I am doing anything before op kids at school and I am a avoiding crowded places with immune system so low.

take care

Louise

Xxx

Hi Everyone

For those of us finished chemo in last few weeks / months it’s somewhat ironic that now ,just when we were enjoying returning to normal society and social interaction we are now being advised to stay away from busy places. At least we are practised in self isolation but as they say life is not fair. So back come a new supply of books puzzles jigsaws etc. The one good thing is I feel so much better since finishing chemo twelve weeks ago. So will enjoy indoor activities more and this time will be able to get out and walk - rain permitting !!

I had my second surgery yesterday and home today so I will have to take it easy for next few weeks anyway. The hospital was exceptionally busy and a hive of activity particularly in theatre recovery areas with lots of beds being set up probably in preparation for new virus customers- a scary thought ! I will be forever grateful to all the health professionals who have cared for me and really feel for their situation as they are on the frontline to deal with this virus.

So take care everyone - we are more at risk than before. And for those undergoing/starting chemo stay safe and isolate as much as you can. Take your medical teams advice.

Love Jojodot

Hi Louise Aldi just announced rationing and certainly here they have had better stocks of most things.So toilet rolls a plenty .

Hubby can't get paracetamol and he uses it to keep his RA pain at a reasonable level . I've shopped early morning when less people around .

my skin still very dry with peeling and cracks near finger tips chemo unit gave me some cream to help replenish skin .It is good as you say constant washing and gel doesn't help . I even wear vinyl gloves under gardening gloves .

Other granddaughter really worried now America announced Uk not allowed flights . She due to do her third year uni over there from August .

Take care 

Margaret x

reading through all the posts, I note that you say your hands are raw from constant washing since this coronavirus advice, so my advice would be to invest in some Simple bars of soap, as I've not had this problem so far and I wash my hands often with Simple soap.  I also agree, that we are just coming out of feeling dreadful and hiding away all winter, to then be confronted with this scenario of isolation all over again due to the coronavirus.  Yes, it's not fair, we just hope that we don't succumb to this virus now.  And as for loo rolls, the Coop near me had plenty on Friday, but I prefer Tescos own, I might have to be less fussy soon, though I do have a spare pack of nine rolls to go on with.  Am going to try driving to Lidl this Thursday to get a restock of food, save my friend who has been so good in getting my weekly shop on most weeks for me since feeling ill on chemo, as I hate putting people out.  It will be a good test for me and hubby wants to tag along with me too, so we will see how that goes.  Finally got my dental checkup on Wednesday, hope that's not postponed now.  Here's hoping all of you out there are having a good and SE free weekend.