The NHS letter says stay home but continue to report for treatment.
Naturally I’ll ring the Royal Marsden to confirm (my next check-up is later - July, I think). But I’m just wondering whether W&W checks count as treatment - they (normally) don’t treat anything.
Hi @BobK99 hope you are doing okay?
As you say, whilst the watch and wait pathway is not an active treatment, it still involves regularly monitoring of a person and their health. We have been informed by NHS England that local healthcare teams will be in touch with people under their care if anything were to change in their treatment or appointments, this would include people on watch and wait. For people who do not hear anything, whilst they can assume their treatment session/appointment is continuing as normal, we would still encourage people to check in with their local hospital as you suggest @BobK99. Hope this helps?
Hi @BobK99 Bob, that is a really good question which @SuBloodcancerUK has answered so well for all of us. How are you finding this isolation and how are you feeling? Take care.
This has been on my mind as well, my next check up in July also.
Although the situation in lockdown may have changed by then of course the virus will more than likely still be around and our situation will not have changed.
It’s not so much the appointment, they could do those by phone, it’s getting the blood test done before.
I really don’t feel happy about going up to the hospital to get it done or anywhere where I’m going to have to wait with other people.
If you are on treatment they take you straight away but…?
Someone I know who has appointment at the end of April rang and spoke to a CNS nurse who said it was up to her if she had a blood test before her appointment or not or made another appointment for a later date.
Not the advice she was expecting!
My brother in law who has CLL had his blood test by visiting a tent outside the hospital which he drove up to.
So I guess it just depends on each hospital and what you feel comfortable with.
Although I would have expected haematology departments to have put some thought into this and made other arrangements for their patients.
Hi Ann and @BobK99, I think you hit the nail on the head when you say, Ann, ‘So I guess it just depends on each hospital and what you feel comfortable with.’ Perhaps it is something we need to discuss with our own medical teams and agree the way forward. Some people seem to be calling ‘watch and wait’ ‘active monitoring’ and perhaps that answers our question, watch and wait is not actually treating our blood cancers in some form but monitoring our bloods (and checking other symptoms) to see if treatment is needed or not. Take care.
Hi @AnnD it’s totally understandable you have concerns around going to the hospital for your blood tests during the current situation. Have you contacted a member of your treatment team to see what they advise and what your options might be?
If you want to chat this through with us please don’t hesitate to get in touch with the support line.
Thank you Alice
I’m going to get in touch with the team nearer the time as things may be different by then.
@AnnD that’s good to hear Ann, do let us know how things go, and keep safe. And the forum is always here if you ever need a space to talk through any worries or would just like a chat too!
Hope everyone else is doing okay too?
I am on daily Hydroxycarbamide and need blood tests every 6 weeks in case dose needs adjustment. Had an appointment on 8th April but received a phone call beforehand saying consultant would do this over the phone (which she did). Was worried about attending hospital prior to that but found that hospital was almost deserted. Could actually choose a parking space!! and nobody in the blood department - so it all went well. Since then they have opened a drive through blood testing unit in Sheffield. So looks as though hospitals are taking action to ensure that we vulnerable patients are protected as far as possible.
He says that people with breast cancer are the ones at high risk and that I might hear in the future but in the meanwhile to go to the voluntary sector for deliveries …I havent been back to the hospital again as he has made me feel I am not entitled to shielding and shouldnt waste his time or the hospital’s
@mrew that’s really good to hear! and I hope also reassuring to other members too How are you getting on in general?
@Annie78 I’m so sorry to hear this, and that you feel this way. The concerns and worries you have are very valid ones @Annie78 Some of our members who have ongoing difficulties with deliveries have shared information about Morrisons and how they’ve been able to get the support they need. Have you thought about trying them?
Thanks Sue. Actually I am doing reasonably well. I am carer for a disabled wife and give support for my mother who is nearing 103. Lifting wheelchairs in and out of the car I managed to fracture a couple of vertebrae just before Christmas and struggling with the pain became a bit depressed so GP put me on a mild antidepressant. Has worked wonders and I am now far more relaxed about my uncertain prognosis and the added stress of Covid. At least with the fine weather I have been able to get into the garden but frustrating not being able to go out. Hope that you and everyone at BloodcancerUK are coping. Best Wishes to everyone. (Blood results were pretty stable so that was encouraging).
@mrew oh goodness, that does sound painful! But I’m so glad to hear you were able to get support both with this, and for your depression too. As you say, @mrew, I can only imagine how difficult it must be not to be able to go out, especially if it’s something you are used to and really enjoy. I hope the garden at least gives you a chance to have some fresh air. How is your mum and your wife doing? How has it been looking after them during this time?
Encouraging news about your blood test results!
Hi @mrew, I have been wondering how you have been getting on, it sounds in your posts that you spend so much time looking after your wife and mother that there is little chance of time for you, how you are and how you are feeling. I am so glad you told your GP that you were a ‘bit depressed’ and that your GP has put you on a mild antidepressant which are working. Fractured vertebrae must be so continually painful. How was your uncertain prognosis diagnosed (if you don’t mind me asking) and what is happening about it I these unprecedented times, I expect the uncertainty must be so worrying for you. Take care of yourself and stay safe.
@Erica very good point Erica! it’s so positive that @mrew felt comfortable in talking openly about mental health with the GP, it’s so important!
My next review was due at the beginning of May and it’s taken me a year and half to get Lewisham Hospital to take responsibility for my care so I have great doubts that it will happen, although my landlord had an appointment for blood tests at King’s this week and it went ahead. They have a row of sinks and soap at the entrance and only allow people in one way. Also as Haematology straight in Department didn’t have many people to see he got straight in, so there’s hope I think.
I also have an appointment at my Haematology Department at the beginning of May and I am due to have 2 different lots of blood tests due next week. So I am going to ring the hospital next week for advice and I will report back Let us know how you get on.
I am having chemo treatment, in tablet form, and was due an appointment this coming week. The hospital phoned and I had a brief consultation this week, over the phone and my medication came by courier the next day. The hospital even realised it was my birthday and passed on their good wishes. I am lucky I have a extremely good and caring consultant and wonderful hospital staff.
@Erica @Franko hi both, I hope you are alright? As you rightly say, it can be anxious time finding out whether your appointments/reviews are going ahead. But Erica, just what you said, is something we always encourage is to ring your treating team just to check-in and hopefully at least give you a bit more certainty.
@Lindatyrer I’m so glad to hear you got medications okay! and happy belated birthday! hope you had a lovely day?
Thanks for your interest. 8 years ago I broke my ankles in a fall and required fairly extensive surgery. Blood tests showed a very low platelet count and I was on W&W with regular blood tests. 3 years ago monocytes started to increase and I was referred back to Haematology. A BMB showed CMML and I was on W&W until last year when counts really escalated and I noticed a skin problem which biopsy showed was leukaemia cutis and I was started on hydroxycarbamide. This has pulled all the counts down so needs very careful monitoring. On the plus side I really have few symptoms other than reduced energy levels. (I was always on the go and now have to take life at a slower pace). As you are aware CMML is incurable and the prognosis unpredictable so with a disabled wife to care for this restricts what we can do and of course is an added stress. The advantage of being in lockdown is that I have been able to give my back a rest. There remains a lot of uncertainty about how long this will go on for. When others are “released” I expect those of us in the extremely vulnerable group will be at even greater risk until a vaccine is found. But for the moment I think we have to concentrate on the here and now and make the best of it. But that is enough about me. How are you doing? Having to read all the tales of woe on the forum must be hard. So very best wishes to you and all the team. Mike