Thank you for your comments. Well still a lot of confusion - not helped by a Registrar who runs around like a headless chicken. My husband, on a second attempt, had a BNP blood test at the hospital (to check the swelling in his legs), but the lab would not process it! Said it came from hospital funding rather than community funding, i.e. our GP. So six weeks on, still no BNP test for my husband. However it is now scheduled for when we get our second covid vaccination from a GP nurse who will be visiting us at the end of this month. So besides the vaccination, I will get my CLL blood test and my busband his BNP blood test.
Besides this, the Consultant wants to see my husbandâs skin blotches - she could have seen them six weeks ago when he showed them to the Registrar! So he is in the process of getting an appointment for this. The Registrar suggested an ointment, which seems to be for dry skin and itching, which my husband does not have!! Then again, the Registrar is not strong on listening. My husband also now has a chest X-Ray coming up - though not sure if it is to do with his cancer or swollen leg problems. Registrar is bad at explaining things, so I usually have to call the dept support nurse for clarification!!
My husband was supposed to have his hormone injection this morning, but they sent a District Nurse who was not familiar with the type of injection needed, so they sent another nurse!!!
Would love to escape all of this, but with my CLL, just do not feel it will ever be safe for me to go out and about in the world. Had a letter from my optician to go and have a check-up, but cannot do this as it involved two bits of public transport and this, despite, having further eye deterioration.
So you can see why I am so stressed and not just about having CLL and feeling if it will ever be safe for me.
At least one good bit of news - my husbandâs PSA blood reading is now within normal range since starting the chemo tablets. However, day to day we live in fear of the phone going and more problems and screw-ups happening!
Hi @Lulu999, life really seems a continual battle and struggle for you both.
I am so glad you have found the time to post and you have also supported others on our forum I hope you can feel some support on here.
I think so many of us can empathise with the frustrations and stresses of navigating the health services and other services.
Since my diagnosis I do not deal with what personally stresses me well and it just becomes all to much.
My GP originally said to me that I should take responsibility for my condition !!
I do do this, but it is hard work. I went to the hospital yesterday for a biopsy for another cancer I have and I reminded them about my blood cancer and my susceptibility to infections, you could say I shouldnât have to do it, but I think better safe than sorry.
If you feel you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Take care and as we said celebrate the little wins.
Hi @Lulu999 I really feel for you. Youâre having such a tough time. Iâm so glad that you came to the forum and have been able to unburden yourself a little. Please speak to us any time that you need to.
I am trying to write to different people, such as Dr. Chris Whitty and people in Oxford about the situation of those who are vaccinated and have CLL. I do not know if I will get anywhere, but nothing ventured⌠I feel such a prisoner - like the old musical song: âIâm only a bird in a gilded cageâ. Some people have cars so can at least get away from home, but we do not. I wish I had hope but cannot see a way out of anything - counselling cannot fix my husbandâs cancer or my CLL and any lockdown finishing means nothing to me, since it will still not be safe for me to go out and about as normal. What a mess. I despair more about my darling sweet husband, than me - but I would at least love a day without despair and no hope.
Meanwhile my husbandâs situation is still a nightmare re: his advanced prostate cancer. He had a chest X-Ray and his going to have an eco cardiogram, as not only as his legs swollen but now his skin looks shiny. He also still has blotches on his body which also needs proper investigation. The nurse from our surgery is visiting us and giving us our second vaccinations next week and, at the same time, I hope to get my annual CLL blood test and my husband a blood test to do with the swelling in his legs. Then we must wait for the test results about his legs and perhaps they will finally put him on medication for this - two months after this was first discovered by the hospital Registrar! Besides this, he has another blood test coming up to see how his chemo tablets are working and the following week another hormone injection. This is our life, such as it is!
Hi @Lulu999, yes, life does sound tough for you both. Itâs that living with uncertainty, awaiting others and the not knowing that is the worst.
âIâm only a bird in a gilded cageâ, but a pretty special, caring and doing absolutely brilliantly bird if I might say so !!!
However it is good news that the nurse from your surgery is doing such comprehensive home visits.
I thought I was doing well getting two appointments this afternoon at my surgery, 40 mins apart, to have some biopsy stiches taken out (on my head for the suspected return of my skin cancer) and my CLL blood tests done.
I was hearing this morning that Blood Cancer UK, collaborating with other blood cancer charities, is raising money to fund research projects into the effectiveness of vaccines for people that have different types of blood cancer. I know they work closely with Dr. Chris Whitty, but research all takes time as well.
I find it very difficult to work out the realistic risk out there.
Hopefully with our good behaviour we will all get our of our prisons soon, still taking reasonable precautions of course.
My morning daily walk, masked up and socially distancing myself from others really helps me, can you get any fresh air and exercise at all?
Well take care and you really are doing well, spoil yourselves and I had better go or I will be late getting to my surgery.
Hope all went ok with your medical appointments. Some of us have heavy crosses to bear and, you too, have one.
I have also written to an organization in Oxford that does some kind of research to see if they can push me in the right direction. I am looking not just for safety answers for people like us, but some hope. I cannot bear the thought of another autumn/winter in lockdown and with these Covid passports, can see the virus coming back to the UK.
When will our stupid PM realise that one has to keep the virus locked out of the UK, just as New Zealand did. That is why they are free of it and like us, they are an island, too. Johnson is playing Russian roulette with people like us and other vulnerable folk.
Completely agree @Lulu999 . They have known about this new Indian mutant strain for a while so I completely fail to see why they dithered about imposing a travel ban with India. Even when they announced it they waited four days. Itâs madness and inevitably the Indian strain is now in the country.
Hi @Lulu999, it sounds like your going through a difficult time and as Erica mentioned we need to see the positive in that the nurse from the surgery is providing home visits which is so important during what is a challenging time for you and your husband. Itâs great to hear youâre being proactive in trying to get the answers to better understand your situation, we hope this will be fruitful in getting some perspective on things. As always we are always here for you if you want to talk about what you are going through and the feelings you are experiencing.
Yes good that the Surgery Nurse visited us with our GP earlier in the week, to give us our vaccinations and do our blood tests. However, no sign of water tablets our GP said he would prescribe 4 days ago for my husbandâs swollen legs, which seems to have arisen since my husband has been taking cancer medication. This problems has not been sorted after nearly 2 months and the NHS is still giving me additional stress.
Besides this, earlier in the week it was two different nurses from different parts of the NHS who phoned to say they were going to administer my husbandâs blood test on the same day - the test he should have had two months ago. Canât anybody get their act together anymore?
Meanwhile I have written to more doctors/researchers to try and get some answers for people like myself with CLL who are on âWatch and Waitâ, but not one response so far. I know it is a case of vaccinate everybody a.s.a.p. and letâs sort out how things work afterwards, but I am beginning to think that people like myself are invisible.
I think of Paul McCartneyâs lyrics for âBand on the Runâ:If I ever get out of here or is it the opening lyrics: stuck inside these four walls
Oh @Lulu999, I can tell that you are a music lover, when anything is going on I can usually think of the perfect words in a song for the occasion.
You seem to go 2 steps forward and 1 back. I am really sorry that your husbands medication has not materialised. It must be horrible for your husband obviously, but also for you seeing him in such discomfort/pain.
As for responses from medical people they are often so busy that it takes ages or they are not used to dealing with people direct.
We are here to support you both and if you would like to speak someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
From my era â tired of waiting from youâ by The Kinks.
So today I was out and about around 9 am for the very first time since March 2020 and I almost had a panic attack. I just felt so unsafe around (not so many but still) other people outside my home and work bubble. People are coughing, kids shouting without masks on⌠I barely made it to work. For some reason this time around I am feeling so much more vulnerable than last summer or even in December. I am not looking forward to further easing of the lockdown next Monday.
Stay safe people x
I know what you mean and how you feel. It appears as if some people are ready to go for it. Iâm still very cautious out there and havenât regained the minuscule confidence of last summer yet. I think that all the hype around opening up and always discussing the next stage before weâve done the immediate release adds to our insecurities. I am very concerned about June and full release, especially if we still do not know anything about the effectiveness of the vaccine. I feel that, for now, itâs outdoors and socially distanced and with very few contacts. I am making no plans but am hanging on to my sonâs wedding in August as my one key event for 2021. Buying an outfit is a different matter!!!
hi @MoMo and @Lababe I know just what you mean. I think it is because last March 20 we were told that were shielding for just 13 weeks. You have been shielding for 14 mths, that is a long, long while. It has become our new normal. We are bound to have lost our confidence, I wonder if I will drive again as I live in an area with good transport links.
I agree it is as if the country have gone back to acting as the old normal. Moving so fast and so hustley and bussily.
I find the traffic is so fast, noisy and fumy.
I think we are doing the right thing slowly and cautiously easing ourselves, baby steps, outside again, taking precautions and gaining our confidence back. @Lababe perhaps if Covid numbers remain low you have your sonâs wedding to aim for.
There is a while to go before August and I think you deserve a new outfit and great big mother of the groomâs statement hat.
If the hat has a really big rim it would keep people away from you and you could also get a matching mask to round off your outfit.
I think your feelings are so normal and perhaps just do what you feel comfortable with and keep posting both of you.
Oh @MoMo Iâm so sorry to hear this, sounds like a really difficult day. Itâs so understandable that you felt so anxious with all that going on around you!
And @Lababe what you said about all the hype around things opening up and lockdown easing further adding to insecurities and anxieties makes so much sense.
How are others feeling about Monday and going forwards? Weâre just at the end of the phone if anyone wants to talk things through, we know itâs still such an uncertain time for many.
@Lababe Iâm so glad that Iâm not only one feeling like a sore thumb middle of old normal that seems to going on at the moment. I havenât been to any other shops except to my corner one and I donât know when I have confidence to go to shop clothes or anything⌠Luckily you have some time to buy the outfit for the wedding! @Erica Itâs funny how 14 months shielding makes us behave differently and how the confidence can go too. I am okay with my home bubble and work bubble, but this morning was surprised how I felt trying to navigate on foot strangers whose lives seem to be back to normal. I still donât have confidence to do major meetings face to face, especially those ones that I donât know what sort of risk assessment is in place (e.g. schools no masks etc.) I just wish, shielding had ended like last year⌠giving us time to easy ourselves to life outside our homesâŚ