When I was first diagnosed I can remember feeling so, so alone and the only person in the whole wide world in the situation I was. The nurse at my GP’s told me they did not currently have anyone else with a blood cancer on their books. Ok, I had family, friends and work colleagues around me and supportive but they did not really understand how I felt I still felt alone and that feeling lasted for absolutely ages. The comfort of finding the Bloodwise website and realising I was not alone and support was there from people who really understood how I thought and felt was overwhelming. Did anyone else feel like this?
I felt exactly the same @Erica.
I researched MDS and discovered that most GPS would only come across one or two cases in a lifetime of practice.
There may be more in the past who weren’t diagnosed at all and died from an infection because of their undiscovered immune deficiency.
I know you are very worried about the “watch and wait”
prognosis you have been given. It means that your condition is not severely developed to warrant treatment.
Take heart from that, it could be that you remain in that condition for a long time.
Good luck and best wishes to you
I am sorry you felt alone during this period in your life.We may have other members of the community who feel the same.
@Erica What reduced your feeling of being alone?
What helped you during your alone period?
I do not think I even thought that there was anything I could do about feeling alone, That was how it was and I now realise it was a heightened shock/anxiety process I went through which slowly subsided over a long time. Even people with other types of cancers seemed different to me, mine was blood cancer. However it was definitely finding Bloodwise on the internet which meant I felt I found the support of people who had the same thoughts and feelings as me that was such a comfort.
Thanks for replying, yes, I now feel a very lucky girl to be on watch and wait.
I think you are right that in the past often undiagnosed people died of infections.
I’ve lived alone since my wife and I separated in 2005.
I did have a very good social life prior to my diagnosis.
The people I thought of as friends soon disappeared when I wasn’t around to keep them amused!!
When I got over the shock of my diagnosis/ prognosis I obviously had to make drastic changes to my lifestyle.
I have lived in Whitstable for 34 years and know a great many people, I make sure I go out walking 4–5 Miles a day.
I live close to the high st and it can sometimes take a good while to walk the length of it, I meet many people I know to stop and chat to.
I’ve always been happy with my own company but realise it’s all too easy to become isolated.
I read a great deal, 3–4 books a week, there’s nothing like a good book to push back any dark thoughts.
It’s not the same as the hedonistic lifestyle I once had but one has to adjust to what life throws at us.
Self belief, which I mentioned previously comes into play.
Make the best of the time you have left.
The song “ enjoy yourself, it’s later than you think” springs to mind.
I was furious when I found out that there was another family with a child with cancer near me, and no one told me because of ‘data protection’. I had to throw out the web and gradually collect people for support. 3 years later the support group I started runs for 3 south london hospitals and has about 150 people who come, at various stages of treatment.
Melody, you have done a phenomenal job starting and evolving such enormous support groups, it certainly proves there really is the need for support groups out there, That feeling of not being alone and being with people who really understand cannot be over estimated.
What a brilliant thing you have started @Melodyberthoud - it is hard with confidentiality to share information with those likely to connect or benefit from support, but support groups and providing ways to make connections can make such a difference, as we hear often. I would love to hear about your experience of starting a support group - was it a long process? Did you face some opposition/obstacles to get it set up?
Hi @Blackhat - thank you for sharing your experience. It sounds like you have been pro-active in getting out and about everyday and chatting with people - 4 or 5 miles a day is some walk! I imagine it is a lovely thing to do somewhere as beautiful as Whitstable. You mentioned some people you thought were friends didn’t stick around - did it strengthen some friendships or help make some new ones?
Unfortunately not Dawn.
Most of the social life in Whitstable is centred around public houses where live music is played.
Always very crowded which I want to avoid.
Whitstable was a lovely place when I first moved here over 30 years ago, unfortunately these days places where alcohol flows freely trouble follows, and drugs are used.
The town is overrun on the weekends and a great deal of antisocial behaviour comes too, that’s not to say we don’t have any of our home grown too.
I doubt it’s just here that has this problem, it appears from the news that most towns especially seaside ones are the same.
Most of the time I’m happy with my own company and I am mobile unlike a lot of the unwell elderly.
I must admit my children’s attitude towards me is very disappointing.
Oh, @Blackhat, I am so sorry to hear some anti social behaviour has come to lovely Whitstable.
I think this on line community is really growing and some really relevant and interesting topics raised,
I am sorry to hear how your family appear to have reacted, I just do not know what to say, I know I have found out who my true friends really are and that some family members just cannot take my emotions.
I hope to hear more about you soon. Take care.
Sorry to hear about the issues with where you live, it must make it more difficult to recover.
And that the reaction of some family around you has been disappointing, I have had a similar experience with my brother although I was not surprised, I had hoped that my life limiting diagnosis would be a wake up call for him but it wasn’t! The good thing is that after what’s happened to me I have changed how I deal with it so I no longer let it in my life.
So grateful for social media and forums etc as I live in a rural area so there are no groups nor is there anyone who has been through similar to me that I can meet up with. I have linked up with lots of lovely people online.
Wow, well done Melody, your support group must be a life line for many, I wish there was something similar near me, I have found that being with/around people who have been through similar to yourself is so helpful.
it sounds as though Whitstable can be a very interesting place given the live music and can be quite crowded. You said you are quite mobile, do you take any trips to get out of the town to avoid the people? Any recommendation of places?
can you recommend any activities you do with people around you to pass the time and stop the feeling being alone
That’s amazing for creating such a huge support group in south London. did you feel alone when your son was diagnosed and you were the only parent that had a child affected by a blood cancer? My niece and sister felt like that when my nephew was diagnosed.
@Blackhat to be honest, mostly social media has been my saviour… I do get out and about with friends and family which is great but its still lonely living with blood cancer because often conversations leave you feeling like you don’t belong and sometimes people avoid talking to you. So I treat these occasions differently to when I talk to my ‘cancer friends’ which because I live in a rural area so not near any support groups is mainly online. I’ve had to adapt even through its been hard.
Maybe see whats going on locally that interests you or go along to something that a friend already goes to or perhaps a charity coffee morning, I held one this year and it was a great place for meeting people who you may have something in common with.
I do get how hard it is, I did withdraw from things for a long while.
Thank you for your encouraging post to me.
When I joined this site previously known as the Lymphoma and Leukaemia Society just after my diagnosis 4 years ago it was to acquire information about MDS.
I found It very helpful in detail as did The MDS Support Organisation.
I need all I need to know about all the stages of the disease and eventual outcome.
Ok, I sometimes get lonely but I can cope with that and the fact that I get no support from my children, although disappointing no longer bothers me.
I have a few really good women friends plus my ex wife who is probably my best and closest friend.
I have never belonged to any social networks, to be perfectly frank, they do nothing for me.
I’m 74 years of age and could no doubt join the numerous elderly organisations that abound, they hold no appeal whatsoever.
I’m at the hospital 6 days in every 28 and have many friends amongst the staff at all levels. The patients at the chemotherapy clinic are in the main a miserable lot, with a couple of exceptions.
I don’t mind my own company and when the desire to find someone to chat to occurs I go out walking.
I’ve lived in this small seaside town for 34 years and am aquatinted with a great many people.
I have grown accustomed to my predicament, it’s just another stage in ageing, if I didn’t have MDS I could have developed numerous ailments that affect all of us as we get older.
I’m mobile, feel well at present, I get tired more frequently but in all honesty for the most part I’m happy at this stage in my life.
I may portray myself as a curmudgeonly old man, but I’m not that at all, I’m friendly and gregarious and still enjoy the time I have left.
Ps 50th month of Chemo next week, long may it continue to be effective, I consider myself very fortunate to have lasted this long as there is a less than 50/50 chance of it working at all
I absolutely get you, happy in my own company and often crave time alone but this makes some think I am strange! I love reading, writing, history, box sets etc so always plenty to occupy me! I don’t feel the need to be around people all of the time so understand what you are saying! Made me smile about the joining elderly organisations, my Dad is the same and he’s 75! In fact he joined weight watchers obviously initially to lose weight but now goes for the social side!
By social networks I mean that when I feel like a chat I can pick up my phone and message someone no matter where they live, no need to prearrange a meet up, there have been times when this has been helpful. This forum and another one I am have been good for a chat too.
Pleased to hear you are doing well!
I’ve always preferred the company of women and tried to join Women’s Institute. They sent me their rules and told me I couldn’t