Fair play to you… I’ve recently had a heart attack and recovering and so far no connnection whether it was brought on by my cancer but it’s forced my cancer to take a side step as I’ve finding the effects of the attack more at the forefront esp with all the meds I’m taking for it and physical drains… whereas my cancer meds are sparce and I often forget I even have it as more chilled and relaxed. Only really reminded when Ive got hospital appointments or blood test to go to.
I imagine it’s like having two kids around I bet…
It’s gutting to hear your not having much symmetry in your care when visiting the variety of departments. Treat it like the weather, next time you visit hopefully it’s a brighter and warmer experience for you.
Hi @DickM , my husband also has ET and prostate cancer. He was diagnosed with ET in 2007 and has also been treated with Hydroxycarbamide. His prostate cancer was diagnosed 5 ago initially low grade and he was put on active surveillance. At that time we were living in East London and we were also very unhappy with the urology department of our local hospital. I felt particularly frustrated by the fact that as his PSA levels began to rise, he was not offered treatment as an alternative to active surveillance. In 2018 we moved to Birmingham. There were various reasons why we moved but choosing a catchment area with a well respected hospital was one of them. So far we have been happier with both the haematology and urology departments. In April last year his prostate cancer was graded as medium. In September he had a month’s course of prostate radiotherapy. His PSA level dropped considerably following this but it’s still early days and they will monitor it every three months to make sure it is stable. I certainly don’t think people should have to relocate in order to access decent hospital treatment and it’s clearly not right that there is such a post code lottery. If we had stayed in East London, we would have had to continue to battle with the urology department in order for my husband to be offered different treatment options.
On a different note, I am also from Scotland but I left to live in London over 40 years ago. I must admit that since the pandemic there have been times I have wished I was back there. The government handling of everything seems to have been so much better, as well as easy access to beautiful wide open spaces.
I wish you all the best with your treatment. Please feel free to ask if you want to know anything more about how my husband is getting on with managing both of these conditions.
I agree the plan B end announcement was just to try a distraction from Partygate or Takingthecountryforfoolsgate.
Will I feel safe, I didn’t last time and I was +2 or +3 away from covid now I am +1, friends and work colleagues falling like flies with one variant or another so no.
Hi @Billy1mate I know how you feel there seem to be so many people I know or their family members have caught Covid.
The main thing is that we look after yourselves.
How are you doing?
Just to let anyone know who has struggled with FFP3 masks, you can order FFP3 half-masks which are light and snug. I have both - the heavy masks, which I rely on if I have to go out and be in close proximity to anyone, and the lighter ones which I use for window chats etc - I also gave one of the lighter half-masks to a friend who was taking me for a medical appointment and she LOVES them now. I have breath anxiety so having easy-breathe masks is important to me - hopefully this will help others! Just to be clear, they’re called “half masks” but they do cover nose & mouth (very well actually, they’re an amazing fit!)
I do agree that we can’t control other people’s behaviour and that we need to try to get on with our own lives while doing all we can to keep ourselves and our loved ones safe. However while doing so I still continue to feel angry with our Westminster politicians. I’ve written to my MP, who is Labour, to let them know that people from many ECV groups are now feeling let down not just by the government but also by the opposition. What makes it more frustrating is that the only politicians who are actually speaking up about this are those in Wales and Scotland. Although it probably won’t make much difference to the attitudes of our politicians, I did feel better after putting my feelings in writing and emailing it to them.
Well done you @Kirsteen action is always better than moaning though I confess to being guilty of both taking action and then moaning about the non response from my MP who just sends out a standard letter urging me to get vaccinated. I presume that his his blanket response to any email with the word Covid in it. I have a colleague who has just moved to Wales and was amazed to find the difficulties of the ECV groups who have not responded well to vaccine being discussed on BBC Wales but not on BBC, still the pandemic is all but over in England isn’t it?
Hi @ Ismo, yes I pointed out in my letter that
although there is one Labour party within the United Kingdom, it is only the Welsh First Minister, Mark Drakeford, who is actually challenging the Government over their current lifting of restrictions in England.
I have written to my MP supporting the lifting of restrictions, and highlighting that I do do as someone who is immune supressed.
I think we have done better than anywhere else with funding and rolling out the vaccination programme, the paperwork/procedures for the extra jabs may be a hurdle, but they can be overcome, many major counties aren’t even doing the additional jab and booster for immune supressed.
Ans we have the antiviral programme too.
I’m not saying it’s perfect, but looking at the route labour was trying to force us down, linking us the the EU programme, with no control over it ourselves, we would have been very much worse off.
There will always be people who think it’s too early, and those that think it’s too late, and if we are not careful, we could end up like New Zealand, which is an horrific situation … 24 days isolation for “household contact” with someone who has covid, you don’t even have to be +ve
I think the whole thing is wearing me down now. I just want some normality but I also feel resentful seeing everyone get on my bus without a mask. In fact on Wednesday I stopped someone from sitting next to me on the bus because she wasn’t wearing a mask and she wasn’t very happy. She said she had a right to the seat and I should get up instead of her if I felt like that as she had a child. I but my lip and didn’t point out to her that she could look after her child far better if one of her hands wasn’t permanently welded to her phone and she actually bothered to look at it for 30 seconds.
From Thursday, people don’t have to wear masks any more on public transport, if you are uncomfortable, you would need to move from now.
The ffp3 masks are much better at protecting the wearer, than everyone else wearing the cloth, or basic disposable ones, so you can give yourself more protection than before, if you want to
I can understand how you feel @Franko. Good for you for speaking up to this woman on London transport. I remember how difficult it can be having to commute for work on the tube and buses especially during rush hour.
I do hope you have a lovely weekend.
I’m sure that everyone on the blood cancer forum wants to get back to having a ‘normal’ life again. However in my opinion this process could have been made a lot easier by a more gradual easing of plan b restrictions as is happening in other parts of the country. While I am gradually doing more, I also know I would find it much easier if transmission rates had been brought down to a lower level is happening in Scotland and Wales. I feel fortunate both to be retired and to have enough money to be able to buy and use high grade masks- which I know is not the case everyone. It seems as if there has been little to no provision made for the immunosuppressed to feel able to return to work safely. In some cases while using crowded public transport with no mask mandates or even strong recommendations as to the importance of protecting public health. I also feel that it would be better for our NHS were transmission rates reduced. The pressure of high hospitalisations means that many other services are being affected, something which
affects all of society.
Transport for London have said it is a “condition of carriage”, that face coverings should be worn, however, it is not a legal requirement, and is not enforceable.
I would use your own FFP3, and not rely on others using their cloth/disposable ones, if you are worried.
If I had access to public transport, I would be over the moon, whoever I had to share it with, masks or not, however that luxury evaporated many moons ago.
It is clear from the above exchange that there is a difference of opinion probably a political difference too. I understand the libertarian lets get rid of all restrictions its your problem protect yourself don’t expect consideration from others point of view but no one has the right to tell others what to do and if that applies to us not telling others to wear a mask (anyway I doubt if any of the nice guys on this forum would tell but ask politely instead) then equally it follows that no one has the right to tell us not to expect and feel more comfortable if others continue to wear masks a little longer. Personally I shall favour those environments where people are more considerate and I shall ask for mask wearing if I feel it appropriate people people can say no and I can walk away.
I don’t think it’s a black and white of people’s political leanings mean they supporting restrictions or not.
Most people will look at the situation, and take a view, considering the whole situation at the time, which means their view on restrictions will vary, depending on the overall situation, at that time, and also not just on themselves.
I supported the restrictions to begin with, however, I also think there has to be a balance for everyone, and an end to them.
I now look at the suffering all around, that lockdown and restrictions have caused, and I just can’t support restrictions on anyone else, anymore, just to keep people like myself (and my 91 year old mother, who has carers) safe - it’s also my mothers opinion, my mother used to be a matron, and definitely has her own opinions, and is also a great supporter of her MP, Luke Pollard.
This has nothing to do with politics,
My political view comes from a joke -
Q - how do you know when a politician is lying
A - their lips are moving
and that covers all flavours of politician
I don’t think all restrictions can be lumped together. Restrictions which impinge on people’s livelihoods are very different from the simple request to continue to wear a mask in a crowded indoor space for the sake of limiting the spread of the virus and protect people like us. How is the mask wearer harmed by that simple act of courtesy? If it can be continued in Wales and Scotland without too much protest and indeed many European countries what is so exceptional about the English? Anyway I try to believe that when they realise the difference it can make I think most people are considerate. I had to get an IT problem sorted and asked the very young man if he could wear a mask as the vaccines didn’t work very well for me and it was obvious we were going to have to have a long conversation to sort things out, he fished around for mask under counter and was very happy to comply. I felt safer he got the business win win.
many people cannot hear others when they wear a mask, they tend to lip read a bit, when they listen, and also need clear speech,
when people wear masks, those people are completely isolated, that have no idea what is going on
but who cares - they tend to be the elderly, and are nearly always overlooked, they are the loose loose people
It is difficult for people with hearing issues which is why i do not wear an FFP3 in seminar and not all people with hearing issues are old I have two amongst my students which is why I learned some BSL some years ago.
On balance I think it would be more unusual for a person with hearing difficulties to die or become extremely ill because they could not clearly hear a mask wearer than for a very vulnerable person to die or become extremely ill of the Covid they caught from a mask refusnik so until the Covid numbers decrease and I am allowed a fourth vaccine which actually works I shall not be afraid to ask for mask wearing when I think it appropriate.
