I share this in case it helps others be prepared. I have Chronic lymphocytic leukaemia (CLL) so was already classed as vulnerable re Covid. In the last year however, I had a tia and have tremors which are likely to relate ataxia, probably cerebellar with remors being most difficult symptom… I had to go for an MRI a week ago and on the journey or at the hospital was exposed and have developed Covid. (Hubby was with me and similarly infected as our symptoms are same time scale). Previous info that I was preapproved etc gave me some confidence. I opened the pack sent to me by the NHS and here is the first bit that might affect others - always keep one full pack AND at least 2 in a second pack. I was opening a new pack and the white test things were in date. However after doing 2 not only did the rest seem older (longer swabs, liquid to be put in tubes not there with silver seal). It was also the era when we had to transfer the liquid into the dropper. Sent hubby to a chemist. Bought kit made by same manufacturer from NHS chemist. Tested positive. Phoned 119 who said the could not take a positive from a test I had paid for myself. NB tremors make testing and even phoning or online usage hard. The one thing that worked well was the prompt receipt of a new pack of 7 tests. Next day tested positive though the phial split when I was pressing it against swab as instructed, phoned 119 but found the time of the help line not as indicated so they were closed. Phoned today. They said they would send a link (not arrived yet!) of how to try to get antivirals. Talk about a frustrating hurdle race. Hubby was fully vaccinated but as some of my ataxia problems seemed triggered by previous covid vaccinations or an immunity issue had held out until they could give firm diagnosis which is dragging on from Dec 2022. He seems to be recovering OK. My worst time is night when blood oxygen seems to dip to 87% at lowest. This whole experience has made the experience a nightmare. I am woondering whether I can face phoning again especially as I understand the earlier the antivirals are given the better. Not sure what others experience has been. To me the key thing is always having more than one full pack of tests at home so as not to risk added delay due to faulty kits. Typing is difficult even with voice recognition so I haven’t contributed much in recent weeks but I do try and read the forum and hope this stops others from a similar fiasco.
Oh @nelletap I have missed you.
What a palaver you have had to go through and just when you least want it.
especially when you have the tremors.
How are you feeling now?
I can really understand you giving up, but the system should not be like like that.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses
Perhaps contacting your medical teams is an idea.
Be ever so kind to yourselves and please do keep posting when you can
Yes, I do keep 2 sets of NHS testing kits, but thanks for the handy hint.
You’ll see the typos in my message above. Correcting all difficult so where they still make sense I don’t bother. Ironically I had an appointment with a neurologist on Thursday and hopefully results of a DATscan but I knew I was ill and that is why I’d tried to test the day before. I’d really wanted those results but didn’t want to risk passing anything on to others and it proved the right decision. I was scheduled to have a flu jab this Friday but will probably cancel as I’ll be low physically. But still conscious others are worse than me. Proud my handwriting is more or less legible now. Amazing how the brain can adapt. At one time my writing was worse than my youngest grandson (7). I am thinking of trying to write to him in fountain pen as I did for both his older sisters. He’s witnessed my struggles and been so considerate. I can do cryptic crosswords again; online easier than printout to write on. In early stages couldn’t make sense of the clues.
Hi @nelletap it is wonderful how we and our brains adapt.
Certainly don’t worry about typos.
I am useless at crypto crosswords and chess, my mind is simple and thinks linearly.
It sounds as if you are really making progress.
Look after yourself and please do keep posting
Hi @nelletap, I’m so sorry to hear this- it’s understandably difficult to be chasing this up whilst also feeling unwell yourself. Do you mind me asking where in the country you’re based? After testing positive for covid, when trying to get an assessment for the treatments, there are different instructions on who to call depending on where you are (these are listed here- Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK).
In a lot of places, the instructions are to call your team/111/your GP. Particularly if you are feeling very unwell, we’d encourage you to reach out to 111. Please do give us a call (or your husband can also give us a call if you’re understandably feeling too poorly to) if you want to talk this through at all.
Take care and please do keep us updated if you can.
Best wishes,
Tanya.
Phoned 111 early this am. I am near High Wycombe Bucks. Answered all their questions. They phoned back 10.50 is this morning. repeated some questions said someone would phone back within an hour or perhaps longer as they were busy. It is now 15.15 and I have heard nothing. As you can see I first phoned 119 on Friday with same aim having tested pos from chemist bought test- Triggering the antivirals. 3 days on just the frustrating hurdles and we were told speed was of the essence. Even waiting for a phone call that never comes can be tiring. I’m just hoping that they are able to triage and get to the most needy but I’m tired of this hurdle race. It is tiring and depressing. I find fluids, especially coffee helps breathing. Copious amounts of Vicks vapour rub around neck area. Paracetemol at times and icecream slips down occasionally, or some cool fruits. Some of the cordials drunk from vaccuum drinks vessels good. My other issues mean I have to drink with a straw to avoid spills. Good luck to anyone in the same battle. My blood oxygen was 87% at worst and was up to 96% this morning. Temperature also nearer normal. If I try to do too much it knocks me back so I am trying to rest. To be fair lots of this advice was reiterated by 111 but implied promises that don’t materialise not what I wanted. Response from this forum welcome light in the tunnel so thanks.
Thank you for updating us, @nelletap. That’s really so understandable to be feeling frustrated as you’ve clearly been trying so hard to get hold of someone. I’m so sorry to hear you’ve not heard back as yet. Do you mind me asking if your GP is aware? Our understanding is this is the other contact (other than out of hours/111) that your local Integrated Care Board would recommend, although I appreciate you may have done this already.
We’re here for you if we can support you at all (0808 2080 888 or support@bloodcancer.org.uk). Do take good care of yourself and I do hope you start to feel better soon.
Best wishes,
Tanya.
My clinical team for Chronic lymphocytic leukaemia (CLL) discharged me to my GP when we had a really good GP who worked with Oxford Uni students as a mentor. She left and despite the specialist having written that she or I could/ should come back to him if anything changed, when I tried to do so I was told I couldn’t (to be fair that was post covid and I imagined they had more pressing problems/patients). I have great faith in my main neurologist who comes back from holiday today. I was due to see another neurologist last Thursday and hoped to get results from the Datscan he arranged at the Churchill, but that was the day I first had Covid symptoms and felt too ill to attend as well as not wanting to share any germs I’d picked up. Obviously the neurologists know about my Chronic lymphocytic leukaemia (CLL) but not sure theyd have anyinfluence re the antivirals. I must be at about day 5 of Covid and I understood antivirals needed to be as soon as possible. Though hubby must have been infected alongside me his symptoms have eased a little ahead of mine though he is still not A1. I’m just hoping we are both on the mend. We are probably better at home supporting each other than trying to have more abortive attempts to get NHS help.
Hello there @nelletap
I wanted to check in and see how you are feeling? So sorry to hear that you had a problem accessing support for your COVID positive symptoms. May I ask if you have heard anything at all?
We are here until 1pm today if you do need to talk?
Kind regards
Gemma
Still showing positive and with typical symptoms. Am sleeping reasonably well though needing to be propped up a little. The sleep seems a dead to the world sleep and I feel disorientated when I wake from it. I got the rash around my neck that I first got with Moderna vaccine which was my 3rd. My lips feel hot and burning and have done since first symptoms. I last heard from 111 on Monday mid morning and they said I would be phoned again in about an hour. They had already phoned me to ask extra questions so I knew they had the correct phone number but that was 5 days ago. With all the Covid enquiry comments re let the old and vulnerable catch it when feeling down you deduce not much has changed. As I am still waiting for the diagnosis and help for the neurology problem since Dec 2022 it is hard to remain positive but am trying. One of the neurologists, more certain that he knew what the problem is seemed to suggest a link with the Chronic lymphocytic leukaemia (CLL). On the plus side all the staff in the NHS at the front line bar one have been absolutely professional and considerate often going above and beyond. It seems things like the support (EG letters hugely delayed, test results being on GP record delayed) make it hard for patients and other staff alike. Impressed by the system UCLH uses called My Care / My chart on app which does at least make patient feel there is a line of communication which is 2 way. I did also get a text from Oxford that I might be eligible for a trial if symptoms were less than 5 days but the fiasco re tests meant Monday was already 5 days in and of course all I’d been told was I was preapproved for the antivirals anyway. Sorry about length of this.
Oh @nelletap I bet you needed to get your experience off your chest in your post.
I find it helps, I hope you did.
Well I just don not know what to say, but all this saga when you have the symptoms you have.
I will copy the Blood Cancer UK nurses. @BloodCancerUK_Nurses
Really look after yourself, that is the most important thing and perhaps stop listening to the media!!!
Please do keep posting on here though
Dear @nelletap
Sorry to hear you still have symptoms and have not heard back after this many days. Also such a shame that you couldn’t be part of the trial offered.
May I ask whether you used to be seen at UCLH for your Chronic lymphocytic leukaemia (CLL)? If this is the case you may be able to get back in touch around the COVID issue and perhaps ask them to escalate the importance of your care to the GP? You could even use the MyCare facility to relay your issues around accessing the anti-virals.
I appreciate that you may not feel like doing this at this time as you are still feeling unwell.
I would suggest calling 111 if your symptoms deteriorate in any way over the weekend.
Do take care of yourself.
Kind regards
Gemma
My Chronic lymphocytic leukaemia (CLL) specialist was at High Wycombe not UCLH; there was a test to confirm sent to Oxford 2010. Day 10 of Covid so surely I must be coming out the other end soon. Thanks for the support on here.
Tricia
Hi @nelletap how are you feeling now?
This Covid seems to be hanging around.
Be kind and look after yourself and keep posting
Still positive but feeling somewhat less ill. There has been some progress re my neurological issues and to an untrained person it sounds as though there could be a link with my Chronic lymphocytic leukaemia (CLL) but I understand this relates to my brain as well. Basically ‘there is a concern about progressive multifocal leukoencephalopathy’ so they are talking about more tests. I’ve had to miss one meeting with a specialist due to Covid and no doubt there will be no tests until I’ve recovered. I imagine it is unprofessional for anyone to comment without all the detail but this does not sound good. Hubby and daughters have been supportive and I have shared the letter with hubby but feel I can’t share with daughters or say more to hubby so feeling somewhat isolated. In many ways it does just fit in to the prognosis given at Chronic lymphocytic leukaemia (CLL) diagnosis in 2010 so perhaps I have had more time to face some things/ implications. Taking comfort from the sunshine outside.
Oh, @nelletap far too technical/medical for me.
I often say it is the not knowing, but perhaps it is the not understanding, as well.
I foresee that you will have lots of questions to ask and please do ask for clarification until you really understand what is being said.
I find I can really share on here what is really going on and how it really is for me on our forum.
We truly are a family on here and be very kind to yourself and keep posting
IN SUMMARY, with Chronic lymphocytic leukaemia (CLL) and preapproved for antivirals I tried to trigger them when I first had symptoms 26th/27th October. I submitted 9 positive results in the correct way from the free test kits I had been sent for that purpose between 27th October and 11th November receiving confirmations from NHS and they show on my GP record. I also contacted 119 and 111 more than once. Thankfully I tested negative 12th November and reported that. Today, 13th November, I received an online GP referral letter early morning and this evening a phone call effectively to offer me the antivirals over 2 weeks after symptoms began. Luckily my recovery on 12th mean I can now access treatments a specialist wanted me to undergo or begin almost 2 weeks ago (relating to Chronic lymphocytic leukaemia (CLL) and ataxia) but I feel let down by false promises of a system not working and hope this example can stop others experience similar or worse due to delays in antivirals. I hope someone who has some clout can forward this to someone able to make a difference. Yes, I am glad I am no longer positive and trying to focus on that positive though still very tired.
@nelletap from what I have heard the symptoms can linger, like the tiredness, so be ever so kind to yourself