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Learning to live with Covid

Hi @2DB I also have this badge and wear it when I go to medical appointments.

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Hi Erica,

Actually I have just completed six weeks of free counselling support from MacMillan - they use BUPA services for this. A nice lady, but twice she said to me that my problems are really quite difficult and she apologised that should could not help me. She has written to my GP twice to say that I need mental help, but no reply back to me from my surgery. In fact, earlier on in the year I wrote to my surgery saying that I felt suicidal, after my husband was first diagnosed with his illness - again no reply!

I was hoping that I could get on the cancer support team at my local hospital, via my Consultant, despite initially being rejected for this by Nurse “Ratchet”. Failing this, my GP could put me on a list for some CBT that might be around, although I would know doubt have to wait until the end of the decade to see somebody, if I should live that long.

I do not want “tea and sympathy” from this Forum, just suggestions and to know if others are having the same or similar problems to me. I also would like to get emails from Gemma Peters to know what is going on in research. I feel that is my only way out of some of my situation - either a cure for Leukaemia or a cure for Covid - that is the only way I will be able to continue my life. Regardless, there is no quick fix here or at present, any fix at all.

Stay safe and well.

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Hi @Lulu999. That’s a real shame. I have just started the six week sessions to and am lucky to have found a really good counsellor. I know that’s always the case. Have you ever referred yourself for talking therapies. I know it can be done through your GP but it was quicker for me to do it on my own. I also referred myself to the hospital service. You may have already tried this - just wish I could do more to help. The lack of support you have received frustrates me X

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Hi @Lulu999 There is some information on current research on the Blood Cancer UK website.
Problem is research into CLL and Covid takes time so as you say there is no quick fix.
Yes, stay safe and well.

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@Lulu999 our haematology support seems poles apart. Are you aware that you can view your blood test results or ask for them to be printed off at your doctors, this may be useful. I would like to think that your consultant may be content with your blood results otherwise he’d be in touch.

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Believe me Nichola, I am not just frustrated with my situation, but also with my husband’s situation. When he was at a previous hospital (Urology) I counted up 14 screw-ups and then gave up on counting more. In one case, for example, a nurse expected me to send her report to the GP, rather than she sending him a copy. Thank God I had a scanner and could scan and email her report to my GP. I also sent an important email to my husband’s Consultant which he never got. Apparently his secretary did not check her spam box, where the email sat way after a meeting about my husband’s condition was to be discussed. At least with his other hospital (Oncology), there are still screw-ups but less at least. He also has a good support team there who will sort things out, rather than buck-pass and leave us to run around in circles. I am so exhausted, you cannot believe, let alone angry, depressed, frustrated and anxious. If I had a good support team with Haematology, it would really help. It is bad enough having CLL, being in lockdown, but my husband’s illness was really the “icing” on the cake and any support I have had has not been that good.

It is like all things; use to have the gas man come and check the meter, then we had to do it for ourselves. I wonder if I got gangrene in my foot, if the hospital would send me a do-it-yourself kit to cut my own foot off.

Stay safe and well.

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Hi Billy1mate,

Perhaps my Consultant might be pleased with my blood results and I do not need a check-up, but why does that silly support nurse ask me over the phone all the time if my spleen and/or lymph nodes have got bigger. How would I know, as I am not medically trained.

I get a copy of my blood tests results when I get a copy of the letter Nurse “Ratchet” sends to my GP. What it means, however, I do not know. All I get from her, is that there is no change and I am still on Watch and Wait. Yet just to be able to have my questions answered by the Consultant would help as Ratchet is so unapproachable. She is from the Javid school - you make your own decisions about safety. The problem is, as previously stated, I am not medically qualified, like our Health Minister is not. However, he tends to want to ignore medical and scientific advice, and I would love to have the opportunity to get this.

I also want Ratchet changed to somebody who is at least approachable and I want support as well, which she has denied me. The hospital has a psychological support unit for cancer patients, but she says I do not need this, yet two other mental health professionals say I am in dire need of this sort of help.

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Our messages have crossed over in the air.
Yes I don’t think your nurse is not very professional or compassionate at all. There must be other haematology nurse specialists at your hospital, maybe ask for a different nurse.
The forum is a great place for info and assistance and it is one place where one can feel comfortable sharing experiences that may help others.
I was diagnosed with CLL in January 2018 and monitored via my monthly blood test for something else I’ve had to live with. I am not sure what my blood test regime would have been without it, I’d say probably 3 or 6 monthly, either way it does seem as though your care isn’t meeting an acceptable standard, unless of course with you being on Watch and Wait (W&W)for 10 years, there hasn’t been any need to do anything different. I was 3 1/2 years from diagnosis to treatment, maybe @Erica is better placed to advise as she has been on W&W for quite a long time. We are all here for each other.

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No change on your blood tests does leave one a bit in limbo but does mean it isn’t getting worse.
Your white blood cell count is what they are looking at, there are other blood figures they look at but as a starter for you and I white cells is where they start. Mine were monitored and if my white cell count doubled twice within 6 months, that was time to start treatment. Mine went up and down but occasionally went up high but only once, then came down again. White cell count is an indication of the body fighting an infection so a cold can send ones white cell count high which has to be considered.

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Hi Lulu999 I’m not sure if this is the correct way to contact you but - before I share on here my own struggles with shielding - as I’m blessed with a very caring CPN for my MDS blood cancer - she taught me how to read my blood test results and wrote out for me what the “normal” blood test range is so I could alert them if a routine blood test result suggests an iffy result before my next Haemotology outpatient appointment (by phone) is due. So if that might be useful to you I can send you those on here or more privately. My own situation with increasingly unbearable shielding is made more ironic because I was blessed with remission just before covid descended on us but my consultant said I remained just as high risk as those on active treatment and I must shield. Because I nearly died FIVE times with sepsis over the 3 years I had MDS blood cancer it didn’t take much persuasion to stay home and SAFE. But now as a “single old auntie” who devoted their working life to caring for others - I now feel my living alone with nephews and nieces getting on with their lives living miles away - I now feel my existence has little or no importance to anyone and whilst I have a strong positive personality and lose myself in TV and watching tennis on TV it’s not going to feel like it’s enough for much longer. So I’ve promised myself with or without the booster jab (which won’t guarantee we are protected anyway) at the end of September I’m going to start going out and about to catch up with friends and invite them and my family (who have all had both jabs) to visit me inside IF they will agree to take a lateral flow test AND wear a mask whilst they give me a much needed hug!!! xxx

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As mentioned, perhaps my spleen and lymph nodes are ok, but why am I constantly asked about this when there is no doctor to examine me. This has to stop. I am not a tick-box exercise. Have not seen my Consultant since 2015; neither have heard from him during lockdown, other than a letter he sent to my GP saying I should shield. This was several months after lockdown had started and I was already shielding. Amongst other things besides a change of nurse and the same question about my nodules and spleen, have questions BASED ON MY BLOOD results, how safe it is for me to use public transport to get to an optician or a dentist. I also want to be referred for counselling. It is not that I have specific problems dealing with my CLL but with Covid and lockdown, it makes me feel very vulnerable but since my husband was diagnosed with advanced prostate cancer, it makes me feel even worse. As previously stated, we have no kids, close relatives or friends that live near to me and, unfortunately, we do not drive. I do not want to die alone and they find my body 3 weeks later de-composing. You may think it is over the top, but it is now a very real possibility for me now. My husband use to be my carer, but now the roles are reversed. And all the screw-ups I get from the NHS for both our treatments makes things worse. There is no solution, but at least I can take some small steps, as outlined above, including stopping poor treatment from my support nurse. I also have other health problems that need sorting, such as sinusitis, arthritis, vertigo, tinnitus, neck and shoulder damage besides insomnia - my list or ailments are nearly as long as my list of problems. I will not even tell you about my home falling apart, but cannot let workmen to long term and needed work in our flat for safety reasons.

You would not believe I once had a life, but no more. Use to go to the theatre, cinema, travel, to the University of the Third Age and get together with friends, but now that is in the past and there is only anxiety, depression and pain to live with and more to look forward to as I do not know how long my husband will survive his illness.

Tonight I will take a sleeping tablet as I will worry if I get a phone call tomorrow saying that my Consultant will not provide an ambulance for me to visit him. This may possibly happen tomorrow (or not) and ruin our 35th anniversary, which is tomorrow. As I said, some of the health service has made my mental health worse than it should be. I know that doctors and other NHS staff work in the most difficult of circumstances, but there is no need to take it out on their patients, as Ratchet has. I am not rude or obnoxious to them and they should not be to me.

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Hi @GillB a great big welcome to our forum. Thanks for offering your assistance to our friend @Lulu999 with blood test results.
Yes, I track mine too so I can get in touch with my GP or consultant if anything seems worrying.
You were really unlucky going into remission just before lockdown.
You seem to have a good plan in place for the end of September which sounds sensible to me.
I was thinking on my daily masked up walk today that pre covid I sat on public transport facing the window and avoiding close contact with others to avoid colds and germs.
What is different now apart from the fact that public transport is kept cleaner nd more people hand sanitise better and I would be masked up so perhaps it is time for me to step outside.
Please keep posting and I look forward to hearing more from you. Take care of yourself.

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Hi @Lulu999 I do just keep an eye on my lymph nodes and spleen and I have always tracked my blood tests. My print outs I get from my GP receptionist and on them they give the results plus the normal ranges.
During Covid times I ring up and ask for the print out and agree a time that I will collect it.
I have been doing this for 17 yrs. I started charting it manually on graph paper but it got longer and longer as I sellotaped extra sheets on, so now I chart it on my laptop.
They do fluctuate a bit and the general trend is more out of range.
Different consultants use slightly different criteria.
I haven’t heard from my medical team either during lockdown, but as long as I book my regular blood tests I am leaving it during Covid times.
As for the answer to the question ‘how safe is it for me out there’ from what I have heard that it is difficult for even a medical person to definitely say. If, and I use the word ‘if’, I have produced any antibodies what would their quality be and that is what I believe some research projects are currently looking into and also what tests and vaccines might be more effective for the vulnerable sector.
You must really miss your social life with friends, I am also a member of the U3A and have watched our monthly meetings on Zoom.
Yes, don’t let anything spoil your 35th wedding anniversary today, happy anniversary to you both.
Please let us know how the transport goes (I am not sure if my hospital provides it) and how your anniversary goes.
If you would like to speak to someone the Blood Cancer UK support line details are above.
Take lots of care both of you.

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I started charting it manually on graph paper but it got longer and longer as I sellotaped extra sheets on, so now I chart it on my laptop.

The first consultant I saw did that too - but this was at the end of last century, and he wasn’t much of a tech-user. I put it all into a spreadsheet and tell it to generate a graph. Not sure what it’s good for, but it gives me a (false?) sense of agency :wink:

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Ok @BobK99 you have just guessed how old I am !!!

I admire all the positive moves you guys are making to try and get something out of life in the difficult situation we are in. Apart from when i have to for work or basic shopping I tend to avoid people as mask wearing in my area is definitely on the decrease. I am lucky to live on the edge of the countryside with many local walks so I can enjoy the freedom of unmasked walks with the dogs but now during the summer with more people out walking I have had to dive into the hedge nearer to the village to avoid the ignorant who wont leave a reasonable space for you to pass and quickly put a mask on to return the stray dog to some idiots who let it run amongst the livestock.so I was just about having a OK time but now I have heard from my latest blood test that I have dropped out of remission and may have to change medication if the mutation tests show that my CML has become resistant to theTKI I take as the other options available have more serious side effect risks for me this feels like the icing on the cake on top of Covid, in particular as the molecular tests take four to six weeks to process as they have to be done at Kings and I don’t have the retest until tomorrow so that is another nail chewing month ahead. I can only hope that the risks of Covid with the new term and the worry about the CML act as some kind of counter irritants but this is not my favourite summer.

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I too don’t get any assistance from the hospital re getting to my appointments once a month. If I was receiving chemo at the hospital then I would be eligible for ambulance service. So during the Covid-19 I have used black taxis for my appointments. I have been lucky to get financial assistance for the cost from work because otherwise I would be bankrupt. I hope you can get financial assistance from MacMillan cancer support? X

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Hi MoMo,

It is, thankfully, not a matter of financial assistance. My husband is not on chemo, but something else and his Consultant made sure he got an ambulance when he sees her or has his regular blood tests. He explained to them that he is shielding, because of my situation and he did not want to take public transport to and from the hospitals, in case he comes in contact with anybody who has Covid and pass it on to me. No problem for him.

However, it seems that I, with the weak immune system, was told that I was not eligible to use an ambulance and would have to go on public transport or private (paid) transport, putting me more at risk than using an ambulance.

I have not seen my Consultant for 5 years; just have had phone Consultations with the horrible support nurse once a year that lasts about 2 minutes. At times she is barely pleasant. You think that under the circumstance that his department, Oncology, and my department, Haematology, would have the same criteria when it comes to ambulances for patients.

I am also terribly stressed and scared, not just for myself, but passing on Covid to my husband who is in treatment for advanced prostate cancer. I am also in the process of trying to get some counselling regarding this. So how can two departments at a hospital have different policies?

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Hi @Ismo 2020 and 2021 will not go down in history as our favourite years.
Sorry to hear that your latest blood tests show that you have dropped out of remission.
That must be scary for you.
Also having molecular tests that take up to 6 weeks to process is not going to be an easy wait for you.
We are here for you so feel free to say exactly what you are thinking and feeling on here, please.

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Thanks Erica just keeping on keeping on and crossing fingers and toes but like to hear how others are coping.

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