Yes @Ismo perhaps keeping on and on is all you can do and I will also cross my fingers for you, but my toes just aren’t complying.
I am coping OK as I do not have any appointments looming, what I do find stressful is when they keep on getting cancelled by the hospital.
Oh yes Erica in the last week I have received 4 appointment letter first for 4th November second cancelling that and saying 23 September and then one on same day saying 30 September then next day one changing 4th to 11th November. Gave up after long wait contacting the outpatients no and listening to them telling where I was in the queue! Am hoping 23rd is the real one cant face waiting til Nov to find out if I have mutations!
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Yes it’s nutters that people like you and me aren’t eligible for ambulance service in the time of pandemic when our immune system is not able to fight Covid. I was lucky to get financial assistance from my employer as going to hospital appointments once or twice a month is expensive using the most safe option = black Hackney taxis.
My support nurse has been useless too, not contacting at all during the pandemic when I was seen in different hospital than before pandemic! As if having a blood cancer cancer isn’t stressful enough we are forced to endure other obstacles or staff being just useless. All the best to you and your husband x
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Bless you I understand only to well. I walk around the same block every day with a mask on and try very hard to be positive but it’s hard. Feel like I am existing and no more.
I am not against the vaccine but have not had it as I over react to medications and at the moment this vaccine does not seem to offer enough protection to let us live a more normal life. Hopefully it time things will improve.
I was proscribed a nose spray one and my reaction to it was most uncomfortable. My congestion got worse to the point my nose and ears fully blocked and my head hurt if I bent forwards also lost taste which did not return properly. Also have ME and a friend has the same and was very ill following flu jab so she has not had jab either. Not enough known yet and not always easy to find understanding doctor .
All we can do is live the best way we can and hope that vaccine and treatments will win the day. They are working on an antibody injection at UCLH called provent . This trial includes people with cancers and hopes to offer protection to those the vaccine does not work well for .
These are difficult times for us who I feel have been forgotten and also feel the message is we don’t count. We are very fortunate to have organisations like Blood Cancer U.K. who have put in so much, bless them all for fighting our corner and being there.
On watch and wait for CLL which I find stressful. Always have my eye on my lumps and bumps (as I call them) Also my playlet count which is 80 and worry about the drop but all we can do is take one day at a time . Hugs 
for everyone who needs a hug. Have noticed a lot of brave people on here and it makes me count my blessings
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Hi, yes I’m with you all the way!
If I would have to live in a permanent vacuum, then for me personally, this would be no life at all. So I made a conscious decision to get out there and return to a fairly normal life, albeit with a mask some of the time.
If I’m outside I don’t wear one, I find wearing them a bit stressful to be honest. I always wear one for shopping. I have had some of my family and friends stay over and I am in and out of my daughters’ houses. I go shopping with my granddaughter which is always an expensive day out.
I have had workmen in and out of the house all year, using the money i have saved during lockdown on revamping the house. I also play indoor bowls several times a week and get my hair and nails done regularly, also dental visits, and the doctor’s surgery
This, to me, is a normal life, not staying at home and becoming more and more depressed. I have booked two holidays for 2022 and 2023, which I am determined to go on. Everyone needs something to look forward to, unfortunately my trip to Madagascar in October is now cancelled. but, I am now looking forward to Guyana and Colombia in South America.
I am also a little wary that by staying inside and not using what little immune system we have, we are laying ourselves open to all sorts of infections against which we have no defence due to lack of exposure.
I am willing to do all of this because if my life is cut short for any reason, not just Covid, then at least I could say that I have done and seen things that I have always aspired to, my bucket list if you like, and not had a mentally stifling existence, which is the alternative.
I realise that every individual handles things like this in different ways and you have to act in your comfort zone, I am not denigrating what others do in order to feel safe, each to their own.
Maybe I’m just part ostrich with my head in the sand but at least I am enjoying what remains of my life, my way.
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Yes, @Sandra @MoMo and @Ismo and @Quercus I am glad it is not just me @Ismo that has a mountain of NHS paper here , my medical file just gets bigger and bigger with cancelled appointments!!!
Yes, good point @Quercus about not using what little immune system we have might make our immune systems even weaker and I am slowly dipping my masked up toe into the water out there and the more I do the less scary it becomes. I realise everyone is doing whatever they feel comfortable (or it might actually I suppose be uncomfortable, but safer) with. That is why it is good to hear others thoughts and experiences.
I have also had tradesmen into our flat recently to get jobs done. I explain my situation and so far they have respected that. Psychologically I feel better getting the jobs done that seeing they needing doing.
Yes, hugs to everyone that might like a hug.
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Love this @Quercus
Would love to hear about your trips
My bestie and family are from Guyana
I would love to visit Machu Picchu one day
Yesterday I had my first friend around in my back garden socially distanced she offered to wear her mask. To start with a felt really uncomfortable putting my hand covering my nose and face but relaxed into the conversation and made us a bit of lunch
Just that couple of hours normality was brilliant but enough for me to start with
I’m going to keep my friend bubble small for now and I feel confident to invite her again
Baby steps all I want is to feel safe 
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Just to add I had my washing machine fixed recently
I greeted him at the window and he came around the back with mask and gloves
I stayed in the hallway while he worked
Once finished he came to the window and explained what he had done
He was brilliant
When I made an appointment in the notes I told them I was still shielding due to blood cancer and gave my instructions
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Hi MoMo,
Only had two hours sleep as I am so stressed. My husband’s Oncology Support Worker kindly contacted her Haematology equivalent who did not bother to contact me. (Did not even know that there was an Haematology Support worker!) So after a week of waiting for a response, I called the Support Worker for Haematology at my hospital today.
Same story; I am not eligible for ambulance service. As I said to her, does my Consultant think it is ok for me to risk going on four buses to and from the hospital? With Covid, it is about time the ambulance rules change for the highly vulnerable and perhaps I will try and get this done via the Head of the Trust. Nothing ventured… I can understand this rule pre-Covid days, but with Covid, the rules need to reflect the present situation.
I also mentioned to the Support Worker that I had a form letter that said “Following our recent consultation”…which is a load of rubbish, as I had not had a consultation; I sent a letter about various different matters I was not happy about re: my treatment, amongst other things. Now, since I cannot get to the hospital I feel safely, I have asked the support worker to see if I can have a phone consultation instead. I do not know if the Consultant actually wanted me to come into the hospital to be examined re: my lymph nodes and spleen or not, as I just received a form letter and not an answer to the letter I sent to him. However, I am not going on public transport with people who do not wear masks for this appointment. I can deal with the other matters I want to sort out via a phone call. No doubt I will have to chase this up as well.
Stay safe and well.
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Hi Sandra,
I hate the thought of that we may all be in lockdown again in the autumn. I just do not know how I will cope, let alone with dealing with my husband’s cancer situation. He is very up and down due to the cancer treatment he is having and that is alone hard enough to cope with for both of us, let alone my own CLL and the thought of never seeing my friends and picking up my old life again.
I saw on tv all the Tory MPs in Parliament not wearing masks, whilst all the other parties had their MPs wearing masks. The Tories just do not seem to care who they put at risk, from House of Commons staff or The Speaker, putting Covid patients with the elderly last year and now neglecting those with immune problems. We have Trump-lite in power and we need more of a Biden+ who will show some leadership on Covid as well as some compassion and common sense. I have never thought of myself as expendable, but with this Government who will not listen to medical and scientific advice, I feel like I am.
Keep safe and well.
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@Lulu999 you really have so much going on and to deal with.
Have you tried your hospitals PALS service (Patient Advice and Liaison Service). I have heard that they can sometimes assist patients?
You are certainly not expendable on here you are a valued part of this supportive forum family!!!
Thanks for the nice comment Erica. I wish I could feel kind and caring like you, but I feel so burnt out.
Yes PALS is on my list if I get nowhere with my Consultant, although they do not deal with my GP not following up, as per the suggestion of the Counsellor I recent used. It was MacMillan Cancer who arranged for me to have 6 free counselling sessions. Nice lady, but even she said she could not help me with all my different problems and some were just not solvable.
As I once said, I do not know who is in worse shape, me or the NHS and I was born a month before the NHS was formed. I wonder who will last the longest!!
By the way re: your recent reply about taking small steps. I feel I do not have the option to have my friend visit us in our communal garden. I am the carer for my sick husband, besides him being the carer for me. He would be too stressed out about this and, believe it or not, is far more fearful than I am. I could also not put him through more anguish. At the same time, seeing my friend through Skype, made me feel sad and I fear I would just break down if I saw her in person, even if we were masked. It would break my heart if I could not give her a hug. I would also feel bad that she could get on with her life after she left me, while I went back inside my prison.
Keep well and safe.
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hi again, I love to travel to places that are not visited by TUI !! Guyana is totally unspoilt and the accommodation is fairly basic - no hot water! As we have internal flights I can only take 10kgs in a soft carry on which means not taking much at all. I’m just looking forward to seeing the giant otters and the anteaters, not to mention the C*ck of the Rock, which is actually a bird with its feathers punked! Apparently, on this forum, I’m not allowed to use the word beginning with C when talking about a male bird!! How funny is that!!
I’ve not been to Machu yet, I’m trying to find a trip that also takes in the Nazca lines, so maybe I’ll see you there? The Amazon jungle calls as well as going back to Ecuador and Zimbabwe. I travel on my own so I don’t have anyone to consider when choosing a trip - bit of a bonus but then you get whacked with the single supplement.
Incidentally, I have not had any trouble finding travel insurance but would be interested to know who else has travel insurance and which company. I have ET but they only ask me if I have ever had a stroke. I was actually asked more questions about my RA.
Keep well and follow your heart, as far as I know we’re only on the planet once, and I for one, refuse to be daunted.
xxxxx
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Wow, @Quercus, I really love your ‘to go to’ list, sounds idyllic and unspoilt.
Yes, there are several words that I have not been able to innocently post on here, which have made me chuckle, mind you it has made me find the *.
I love your brilliant last sentence and I look forward to hearing more about your travels.
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I’d already reached the point where I decided that I had to find a level of acceptable risk to live with Covid but society beat me to it. I’ve noticed out and about that there’s rarely anybody but me wearing masks on public transport or in shops and my university has decided that we’re going back to as close as normal as possible in two weeks. Students will still have some lectures online but most of their classes back face to face and my team in the Library will be back working full time on campus from then. Other teams in the Library are allowed to work 2 days from home but ours can’t as the work at home has dried up and we’re a student facing team so our job is primarily on site though we haven’t been able to do large chunks of it in the last year or so. I’m not sure if I’m apprehensive about it or not but I’ve got a few days away to think of it next week.
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Yes indeed @Franko I have noticed a real decline in mask wearing particularly amongst younger people and unless your uni is very different to mine students were not terribly good at it when it was the law so be careful. Remember that your employer has a duty of care toward you and cancer is a disability under the DAW legislation so if you have few antibodies in response to the Covid vaccine and feel at risk nexterm particularly if Covid rates on Campus rise you have the right to ask you employer to make appropriate adjustments including removing you to a less exposed role. I hope that you are a union member speak to your rep I am on the teaching staff so probably different union but we have already made representations to HR re extremely vulnerable staff. They are not always well received but this is usually because HR believe the vaccine works for everybody not because they are unwilling to help.
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Interesting piece from a site called “The conversation” which posts material mainly from scientists. I’ve generally found their stuff very useful on a range of topics and thought this piece would be of general interest. It relates to the situation in the USA, but maybe that will be enough of an incentive for Trump-lite to take notice.
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Hi @DickM thanks again, I expect we will be informed in the UK soon as the year marches on so quickly.
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Ask to see the workplace risk assessment
https://www.hse.gov.uk/coronavirus/working-safely/protect-people.htm
Clinically extremely vulnerable workers
During the pandemic, the government has defined some people as clinically extremely vulnerable (previously described as shielded).
These workers are at increased risk of severe illness from coronavirus. Since 1 April 2021, the UK government has said that anyone in England who is clinically extremely vulnerable is no longer advised to shield. From 19 July 2021, social distancing guidance no longer applies in England and the UK government is no longer instructing people to work from home if they can. Employers are encouraged to talk to any clinically extremely vulnerable workers returning to their workplace, so they can explain the measures being taken to ensure where they are working safely.
More information for clinically extremely vulnerable people, covering travel, socialising, educational settings and vaccination, is available from Public Health England.
You can find information on separate arrangements in Scotland and Wales, and guidance on who is clinically extremely vulnerable and what further support may be available, from Health Protection Scotland and Public Health Wales.
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Thanks for the reminders of important info. I am waiting to see my workplace risk assessment before I return next week 
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