Is Watch and Wait treatment

@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!

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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.

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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.

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@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?

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Hi Erica
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

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Thank you Sue yes I did have a lovely birthday, flowers and a hamper delivery, and some imaginative internet cards.
Keep up the good work and its good we can air our comments, as these blood cancers are a lonely and frightening journey at timed. xxx

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@Lindatyrer that’s lovely! Brilliant that you had a great day, and sounds like some lovely gifts you got too :smiley: and thank you so much for your kind words, we’re so happy that this forum has given many a safe space to talk and really encourage you all to continue reaching out for support :+1:

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Oh, that sounds a lovely birthday and the biggest thing of all to me is the thought and imagination in the gifts. A belated very happy birthday to you too.

Thanks Mike, your last 8 years seem to have really changed your lives. It cannot have been easy to recuperate from breaking your ankles, let alone the shock of your diagnosis and that was just the start. I was diagnosed in 2003 with CLL and then in 2011 I bent down to do my shoes up and fractured a vertebrae in my back. Since then I have fractured and crumpled 7 in my lower back. I have also lost 5in in height, somewhere. It is osteoporosis in my case, so like you I know how painful it can be. I get fatigue when I have overdone it emotionally, physically or practically either immediately or up to 48 hrs later. I also do not deal with what personally stresses me well now. It is never enough about you, that is what this forum is here for as I have found sometimes friends and family cannot understand as we do on here, so please keep posting.

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Hi Ann. I have been worrying for some time about my blood test prior to my Consultant appt. She told me it was up to me also but eventually I decided to go for the test as a I thought my appt would be pointless without a review of my bloods. I phoned my Oncology nurse and she explained the procedure. I went this morning I waited in my car until I was met by a nurse who took me to a room for the test. I didn’t see another soul. The nurse had PPE and I felt completely safe. I stripped off when I got home and put clothes straight in the washing machine and then jumped in the shower.
I think each hospital will have its own way of keeping you safe so really best to ring your nurse. I wish you lots of luck with everything.

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Hi @jucol, a very warm welcome to our community forum. I have found the forum extra supportive and helpful since we have been in isolation. I was very impressed with your blood test experience. The NHS must be really struggling and now getting systems in place for everyone’s safety. Yes, there will be differences in how various health care providers can operative. How are you doing during this isolation period?

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@jucol a warm welcome to you! I hope you are doing okay? That’s so reassuring to hear of your experience at the hospital, it sounds like you felt well supported? As you say, there can sometimes be some variation between how different hospitals run, but we’d always encourage people to talk through any concerns with them if they are asked to go in. Thank you so much again for sharing your experience, I have no doubt it will offer some reassurance to others.

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Well I rang the CNS nurses re blood test and they said it was up to me I could go to the hospital or my own GP.
As my veins are pretty awful to find decided to go to the hospital. Went by car to avoid public transport.

Needn’t have worried.

They were checking temperatures at the entrance handing out sanitiser and masks.
The staff were fully kitted out.

There was nobody waiting in the blood testing area, went straight in and straight out.

I feel strangely liberated.

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I am so glad you had such a positive experience at the hospital when you went for your blood tests, I believe most hospitals are trying to get safe working systems in place. Please let us know when you get the results back.

I was physically back at the clinic last week for the first time since the lockdown. I must admit I was rather anxious having not left home in over 90 days. I glad to report that all went well. The clinic has been moved from the usual outpatients department to one of the wards in the Cancer Centre. Before I could get through the front door they took my temperature and other details to make sure I hadn’t any symptoms or been in contact with anyone who may have Covid. The waiting area was laid out well to keep all the patients separated by at least 2 metres. The nurse took my blood and then I was sent home. My consultant phoned me at home within an hour with my results. All in all very well managed and I definitely felt safe.

All the best,

Peter

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I am so glad that you had a positive experience at the hospital, it sort of gives you more confidence in the the NHS. As for getting your blood test results within an hour, that really is great service. How are you doing with isolation?

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Thanks Erica. I’ve found isolation to be manageable but I’ve been very busy throughout the last couple of months with the end of the academic year and having to move to delivering everything remotely. Since shielding was eased I’ve been out for walks a few times but am very careful to avoid others and I always wear a mask. I must admit I’ve found everyone I’ve encountered has been very vigilant about observing distancing. Still feels very weird though.

All the best,

Peter

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This is so encouraging to hear @AnnD, thank you so much for sharing! It’s totally understandable you felt worried about the prospect of going into hospital at this time, but it’s really good to hear they had these precautions in place. Hope you’re doing well, take care.

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So encouraging to hear that it went well and that you felt safe at the clinic Peter @Dyslexicprof. I can only imagine how odd it was to leave your home after so long to go to the appointment, totally understandable you felt anxious. Thank you so much for sharing!

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