Hi Su, I would have to agree with you that the absence of the word ‘cancer’ attached to a condition creates general confusion at times. Speaking from an MGUS standpoint or when its then considered to be asymptomatic/smouldering myeloma it seems to sit on the fringes and is hard to explain when people ask, “what is it you’ve got?”. How when on ‘Watch and Wait’ which is of course at the favoured end of the Myeloma stages do you answer. Is it or is it not captured within the term as a form of cancer. I personally struggle with this as I do not want to feel that I am watering down Cancer which is serious to include a diagnosis thats not considered so serious even though i’d argue what constitutes as “asymptomatic”.
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Hi Erica, thanks for the welcome. I also believe that we are all ambassadors and play an important part in getting the message out so that its not only when ones affected by Blood Cancer in any capacity that we gain knowledge but that our cause is known regardless.
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I think that a lot of people don’t think of blood cancers as “proper cancers” and for sure the confusing names don’t help. I wish we talked about blood cancers and then subdivided just on the types of cells so for example most lymphomas and leukaemias could all be called “Lymphocyte blood cancer”. The other thing about some of them is they are so slow and dont need treatment so people don’t always understand that you are living with a cloud hanging over you. The current anxiety of course is a great example whilst many of us manage to work etc suddenly everyone has been told that all types of blood cancer make our immunity worse. Some people with blood cancers are not even told that by the haematologists that they have a weaker immune system (who I would rename blood cancer doctors and let those who deal with the non cancer blood diseases have a different name!). I hope that people will be a bit more aware of blood cancer moving forward after we were actually remembered in the government warnings this time (Something that I must say surprised me a bit since we are often forgotten in official documents)
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Im not so sure that smouldering myeloma should be considered “not serious”. Its surely an early stage of a blood cancer, often developing. If we call certain skin cancers cancer when some of them are very easily treated and removed, surely we should call myeloma a cancer? I often talk about the difference between an acute or fast growing cancer and a chronic or slow growing cancer. With blood cancers often these days the acute ones whilst more dangerous and life threatening in the short term are often treatable and people can even be cured of them. Whereas the chronic ones tend to take their time before they become dangerous enough to kill you directly but do all kinds of damage in the meantime and are sadly often not curable only containable. Sometimes having a chronic blood cancer can be very anxiety provoking because everything seems to be happening in slow motion and often the doctors tell you to watch and wait which basically means “until you get sicker we won’t do anything”. The opposite of most cancers where they say "lets cut it out and treat it aggressively to try and get rid of it.
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Adrian, the substance of the points stated in your response I’m sure we are all in general agreement with. I have researched MGUS and its potentially progressive asymptomatic/ smouldering myeloma stages and as you say they are within the chronic in nature form hence the resulting, ‘Watch & Wait’ response (even when you feel you have untoward symptoms regardless that it’s termed asymptomatic !). I understand that treatments may prove worse than any such untoward symptoms and that medical research indicates ultimate outcomes may not change due to an early intervention. However, simply ‘waiting’ generates its own anxiety creating a sense of ‘not so serious’ which seems at odds with attending scheduled quarterly appointments. It would be interesting to know how others on Watch and Wait feel.
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However long I have been on watch and wait I still get anxious before and during all blood tests, other tests and appointments. The same feelings come up when I get infections or teeth problems. I am also aware I might be more susceptible to other conditions as well. I often don’t bother to try to explain the concept of watch and wait to people now. At one point a friend of mine came into some money and offered to pay for me to get treatment privately so I could be ‘cured’. I was so touched and explained it all to her but she still doesn’t really understand today. When I was first diagnosed I tried to explain it to my employer and work colleagues, but I couldn’t really explain what I did not understand or seem logical to me at the time. Today I am so, so grateful to be on watch and wait.
I certainly struggled when I was put on watch and wait to get my head round the idea. I was told it might be years. But in the end I had what my doctors called a “stormy course” with serious infections and even surgery (unusual in blood cancer but my tonsils grew and were blocking my throat). But Over time you get used to the idea and so when it is suddenly time to treat that’s a Whole other thing to get used to. Chatting to people who’ve gone through it definitely helps.
Oddly tho the uncertainty and insecurity we feel after a diagnosis is increasingly suddenly being felt at least to some degree by ordinary people facing this COVID19 situation. Suddenly I don’t feel quite so alone!
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Erica / Adrian I concur with the points you make about the anxiety and uncertainty but at the same time feeling relieved and grateful that I am not in need of active treatment for the progressive condition. I too have been offered financial assistance by a well intended friend so that I could go and be cured by being treated privately as having something wrong yet not being treated is hard for others to get their head around. Ive felt a sense of relief being able to give voice to my thoughts as I’ve never knowingly spoken to another person in the Watch and Wait category before !
I will also add that with regards MGUS (albeit the result of producing abnormal monoclonal plasma cells) there is not a clear medical consensus of whether it is termed a (blood) cancer. Although ‘blood cancers’ are specifically included within the COVID-19 high risk category, MGUS I believe is itself not captured within it regardless that plasma cells are part of the body’s own immune system.
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Hi Adrian, Shaka and Erica,
Blood Cancer covers so many types, I believe there are 137 types.
I have Myelodisplasia with a very poor prognosis but it’s very hard to explain to someone who asks what ails one.
Ridiculously I rather envy you folk on watch and wait.
I’m on chemotherapy 5 days in every 28 to delay the onset of Acute Myeloid Leukaemia which I know will develop when the chemo ceases to be effective, and my death will follow.
I’m extremely fortunate that Azacitidine is still being effective, for some patients it doesn’t work at all.
Last week was monthly cycle 69.
My haematologist is rather surprised that I’ve survived this long, so am I.
Best wishes
Anthony
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Hi @Blackhat, @Adrian, @Shaka, Antony after what you have been through since diagnosis and prognosis I certainly do not think it is ridiculous to envy us on watch and wait. I admire you. My first century of life were medically uneventful and I had 30 years without a days sickness from work, As many others, I have also had a catalogue of other medical events, ops and treatments since my diagnosis, nearly all apparently I was more predisposed to have.
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Hi’ all, I’m new to posting as I normally just read and stay in the background. However i’d like to say that although the subject matter we have shared is indeed regretful, being able to openly speak and share is not and is an overdue first for me.
Blackhat I sincerely admire the without bells & whistles and honesty in your words.
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Dear Erica and Shaka,
Thank you both for your kind words, made me blush!!
Shaka don’t just sit in the background, this is a wonderful site where we can all share and both give and receive support.
We are all in the same boat, I’ve certainly benefited belonging and I’m sure all of us on this forum have too.
Good luck and best wishes
Anthony
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Hi David. I have only just become aware of this post, probably because somebody else has just read it and liked. I probably missed it as I was having a major operation at the time and took a long time to recover, so was not going on the forum for a few weeks. As you know I have stumbled from one medical emergency to another since before lockdown 
To answer your questions, I spoke briefly with Ian and had a photo with him, my daughter and 10 week old grandson who supported me around the course. I have had my photo taken with Glyn Purcell and had a chance to thank him for his support of our charity. Two years ago I helped at 4 bucket collections at the Birmingham Hippodrome when Calendar Girls, the musical was on. I had photos with Sue Devaney ( now in Corrie, and she was telling me about her friend with HL) and Julia Hills. One performance they had problems with the safety curtain and I spent half an hour chatting with the female members of cast. Judy Holt was amazed that I remembered her in her first tv series, My Father’s House. Lesley Joseph was also there.
Satnam Rana was also there one day, doing a piece for Midlands Today and she was delighted to have a photo taken with me. We spoke briefly of her breast cancer, and I often think of her now that I have also had that diagnosis.
I am proud of the work I have done speaking at events and being filmed for the the charity. I also am open with medical students and people who are caring for me during my latest escapades. Dealing with a cancer diagnosis has been so much easier than 13 years ago as there is so much more support and better knowledge about how to deal with the emotional and financial pressures, as well as the medical. Best wishes
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I agree that blood cancer generally has a low profile. I think part of the reason for that is that there aren’t many celebrities who have had blood cancer. I can only think of a Clive James with Leukemia and Kelly Holmes’ mother and o only know those since my own diagnosis. When I was told I had Myeloma I’d never heard of it and didn’t realise it was a cancer. Everything I’ve learned, I’ve learned since then and had to make a lot of effort to find it out. Blood cancers have certainly had a higher profile in the last year though thanks in part to the amazing work of the charity we’re all gathered on this forum for and hopefully with new exciting treatments like the Car - T cell therapy and documentaries like War in the Blood, more people will be educated to recognise the symptoms and seek help earlier and not end up flat on their back and unable to walk like me because they didn’t see it coming…
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I know it is a while ago but loved this post. I would love to meet Beefy, maybe we should persuade him to do another of his ‘little walks’
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sorry I missed this post, busy, busy! I really enjoyed reading your post, really interesting, What fantastic support you have given the charity @Pisces56 (I have so many projects that I do not always get time to keep up with list messages!)
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