I feel a fraud having no symptoms of CMML

Chronic myelomonocytic leukaemia (CMML) is a rare type of blood cancer. In CMML there are too many monocytes in the blood. Monocytes are a type of white blood cell.

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BCEX14
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Re: I feel a fraud having no symptoms of CMML

Post by BCEX14 » 25 Mar 2020 16:12

Hi Chris, glad to hear you are still as well as can be!
It sounds as if you won't starve anyway! ( not will we actually, as our village pub is offering takeaway/delivery service if we're desperate! In the meantime, I am cautiously venturing to the supermarket once weekly).
Regarding my work, Marie Curie have stated that until we can obtain supplies of gloves, gel and face masks we won't be able to visit anyone exhibiting symptoms, but that they fully expect to receive those supplies very soon and then it is highly likely we will be nursing some of these folk. MC have also offered our services to the NHS, so maybe we will be sent into the hospitals too?
Our manager has asked us all to send proof if we are living with a person in the extremely critical group, so I'm hoping this may mean I will be exempt from visiting those with a confirmed diagnosis, but nothing has been mentioned yet. I will raise it on Monday, by which time I hope Chris will have received his letter.
I've actually been off myself for the last 2 weeks with shingles , due back on Monday night!
The weather is glorious, thank goodness for that! We have a large garden, so have been outside most of the time doing various jobs. We are also lucky enough to be surrounded by beautiful countryside, so lots of places to walk the dog without fear of meeting anyone else!
As you say, we miss not having our 4 year old grandson to stay. His mum is expecting another child at the end of June, and she works in healthcare too, so is obviously anxious as well.
Anyway I do hope you stay well, and do keep in touch
Kind regards
Bronwen
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 25 Mar 2020 17:58

Hi Chris and Bronwen, Great to read your posts, and how the situation is being managed. Bronwen certainly don't envy you having shingles, having had it. I know how painful it can be especially if you stop taking treatment early like i did. As for letters, notification, advice, texts, medical information I have had nothing. Several weeks ago I spoke to the specialist nurse about going abroad on holiday she spoke to consultant who said no issues as my white blood cell count was within the tolerance as was my Neutrophils . I wondered to myself if all the white blood cells were normal. Anyway they should know people think, but I don't think that, in my case. I can't recall if I have mentioned, when I saw Professor Bowen, he told me that CMML was rare but I had also a rare form of the rare CMML, but it is a recognised form. Never got told that by my Consultant, the professor also recommended blood testing every 3 months instead of 6 months, something my Consultant never acted on so I arranged it myself. I think I am vulnerable, but certainly not sure if I am extremely vulnerable, so obviously I am doing all I can to isolate myself. Getting lots of outside jobs done and of course planting and sowing in the allotment in tandem with my neighbouring allotment holder who is recovering from a successful stem cell transplant for AML and has been notified as extremely vulnerable, and stopped from working for 12 weeks. The only plus so far in all this for us, is we can visit a local farm for fresh free range eggs dispensed by a machine after cash or touchless card payment no human contact whatsoever, and they are lovely eggs.
May I ask you both, do you ever wonder if we are the only three people in the country who are dealing with CMML in their lives, I do. Would love to hear from more people about their experiences.
Didn't make the holiday, flight cancelled, and have got all my money back, a result.
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 25 Mar 2020 18:31

Hi Graham and Bronwen

The definition of extremely vulnerable includes
"people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment".

That should surely be everybody with MDS and particularly CMML, the clue being the L?! If you haven't had an NHS text or letter by 29th March, I would suggest an administrative oversight has occurred where somebody hasn't ticked the box!! Would definitely query this with your GP practice or haematology consultant. The restrictions are more severe than for the normal population and you need to get your loved ones to use shielding techniques to protect you -as Bronwen is trying to do.

I don't envy you the shingles either!! Not so much painful for me at all but excruciatingly itchy!! I had it 6 years ago - brought on I'm sure by my son stressing over his forthcoming wedding and me trying to contain it!!

No Graham. We're not the only 3 CMML cases. I have at least another 2 people in the Essex MDS support group but not everybody likes to use the Forum. Also there is an MDS Facebook group which is quite busy but I don't use Facebook. If you do, you might find other CMML patients on there? Also, some CMML patients join Bloodwise and again you might find some posts there? We are still quite a select group though and have different manifestations of the same disease. Why is yours rare?

Bronwen - sounds like you live in a lovely place so it's safe for Chris to go out walking. NHS tell me not to go out -though I may open a window!! Wow! Thank goodness for the back garden and time to sow seeds ready for planting out!!

Take care.

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 01 Apr 2020 11:28

Hi Chris/Bronwen, Took your advice Chris, and emailed my specialist nurse for clarification this weekend, asking if I was classed as Extremely Vulnerable not having received any notification. The nurse passed it onto my consultant who responded, "Yes, you would be classified as vulnerable with your blood condition. The list the government had was taken from various databases, and therefore isn’t foolproof. The hospital is performing a mop up operation, but as you have not required chemotherapy, you may not appear on that list either". Not quite addressing the extremely bit. The consultant also asked if I would be happy to forgo my appointment later this month and get test done a few weeks later. As far as I am concerned any Corvid -19 testing should certainly override mine as the only symptom I have known, is an enlarged spleen which they now know about. I do however have a niggling feeling on my left side slightly towards the back sometimes , don't know if that's the spleen?, Chris?.
Why is my CMML rare, rare, I don't know its just what Professor Bowen said to me. He also classified me as CMML 0 , in the letter to my consultant
Got a phone call out of the blue from the farmers wife who own the field next to our house. She is an Occupational Health Nurse who has just been given a patient with MDS. She thought she should brush up on the subject and went onto our patient website and came across my story, which shocked her and she felt she had to ring me to ask if there was anything she could help out with given the times we live in. I was very touched to receive the call and what she said. It goes to show how valuable organisations like our MDS Patient Support group is.
How are you all doing? well I hope? I am catching up painting gates, sheds, potting up Dahlias and sowing vegetable seed and looking forward to seeing them all bear fruit later this year. Also getting on with the allotment alongside my two immediate neighbours who are both classed as extremely vulnerable. Best of the bad situation for me is I seem to have more money in my pocket now that we can't visit shops and buy things we don't really need. Looking forward also to seeing what's at the bottom of our chest freezer, when hopefully we'll see it in a couple of months.
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 01 Apr 2020 12:55

Hi Graham and Bronwen and any other CMML patients reading this. Keep well all of you.

Glad you're getting somewhere with your extremely vulnerable classification, Graham. You will be getting a letter from the patient support group with your MDS newsletter soon but there's a copy on this website so do take a look. Mind you, I haven't yet found I can use this status to get my shopping delivered which would help my husband to shield me by not going out himself to get shopping. I do have a son and a daughter nearby but both have young children so I don't want to extend their shopping trips and put them at risk!

I'll also start sowing seeds to plant out on the plot when it warms up a bit! Can start tomatoes earlier this year as we won't be going on holiday in May so can get them in sooner!!

How touching to hear from your neighbour, Graham, and to get those offers of help. This is bringing out the best in people (well apart from the idiots!).

Plenty of gardening and lots of social contact! So much so that I'm not getting anything else done!!
Ran round the garden 20 times the other day but when I totted it up that was only 400 yards!!

How are you getting on Bronwen? Hope your work situation is becoming clearer?
Keep safe

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 01 Apr 2020 16:04

HI Chris, In respect of your shopping. Have you registered with the Government try using this https://coronavirus-vulnerable-people.s ... in-england .Once you have registered with the Government you can go onto Sainsbury website and If you are over 70 years of age, or you are extremely vulnerable and live in Wales, Scotland or Northern Ireland, you can get access to priority home delivery slots by calling us at 0800 953 4988.
I have done this and funnily enough after posting the last post I got a text from the Government confirming my registration saying they were passing my details onto the NHS and also to supermarkets and I also got a text from Sainsburys who are going to contact me tomorrow. Hope this may help. It has taken a few days but at least something has now happened.. When you call Sainsbury its automated and you need to input using phone key pad.

Graham
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 01 Apr 2020 21:40

HI Graham

That all sounds great! I had already registered on that link quite a few days ago but I have had no contact from any supermarket. I did originally tick the answer that I could get shopping but, thinking about it, I'd prefer that my husband didn't have to go as he is over 70 and shielding ME - even though Waitrose Sunday morning slot was very well marshalled and not crowded so he felt quite safe! So I went back into the site and altered that response - they say you can update it if circumstances change. I'll have a try of the 0800 no. Is that for Sainsbury's? Thanks for your help. We haven't had home deliveries for years but will have to get back into the swing of it!!

Thanks again.

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 03 Apr 2020 12:59

Hi Chris/Bronwen, Just to let you know got second text from Sainsbury's last nigh telling me I could get a slot. Went on their site this morning logged on and selected slot they had good selection of times and dates and being Yorkshire with a scottish father I got a £1 delivery slot. Worth bearing in mind in case you are not aware but you can order, put your card details in, checkout, however you can add alter or subtract anything up till !!pm the night before delivery, hope this helps.
Also got a new appointment date for June 26th. Hope you are all keeping well and enjoy the warm weather this weekend.

Graham
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 03 Apr 2020 19:55

Hi Graham and Bronwen

Wow! Great news. Glad you got such a "good value" slot too - that's a bonus but I'll say nothing about National or regional stereotypes!! ;)

After doubting anything would happen, I got an e-mail from Tesco today to say I could get priority online delivery!! It wouldn't be my supermarket of choice these days but I'm guessing that the Gov is sending lists of names and address to ALL the supermarkets and they are then selecting from their registered customers. I last used Tesco about 8 or 9 years ago but maybe that's why? Didn't ever use Sainsburys (unfortunately!) but did use Waitrose so who knows I might get a choice!! Going to go online now and see what happens. Doubt I'll get one of your bargain slots, Graham!!!

Yes. Have a lovely weekend,all. I shall probably be going to the allotment to coax out a few winter weeds and plant the second early potatoes!!

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: I feel a fraud having no symptoms of CMML

Post by chris » 06 Apr 2020 22:05

Hi All

So today, not only did I get my Tesco delivery this evening but this morning I got a food parcel delivered by a massive Brakes delivery truck!! I feel so embarrassed at receiving it as all I wanted was priority online shopping delivery. Now I have that I'm fine for shopping. There were many items which I'm afraid I can't use as we are mainly vegetarian and I need gluten free foods so I'm donating those things to a homeless charity. I've now gone back into the online extremely vulnerable registration and changed my answer to "Yes. I can get essentials" but I now worry that that will exclude me from the priority online shopping with Tesco?! I went onto Tesco site and booked the next earliest delivery which is in 12 days' time!! Still we can manage until then.

How are others faring!

Take care

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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