Oh @Jay I’m sorry to hear what a tough time you’re going through. Totally understandable that you don’t want to share anymore but just know this community is here if and when you need us. Take good care, Alice
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Hi Alice , What’s the phone number , so if or when I can - call for a chat ?
I think isolation is my biggest thing as I’m here on my own and today my right leg is really bothering me and to add to it im an emotional wreck , which I want to pull myself out of , I know I’m not a 100% yet and I have my recovery journey , which will take time , what doesn’t help is others thinking/saying your in remission nothing wrong with you now , so get on with it , I wish they knew what it’s really like to be told you have cancer then the treatment that follows , they have no idea…
Alice thank you for your reply
Jean x
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Hello @Jay the support line number is 0808 2080 888. It’s free and confidential. Gosh yes I can imagine people saying things like ‘get on with it’ is unhelpful and shows a real lack of understanding of how tough it can be. Take care and give us a call if it might be of any help! Alice
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Oh @Jay you are so, so right when you say people that have not had a cancer diagnosis and treatment has any ideas what it is like.
We know what it is like to be a bag of mush, I love that description.
@Alice_BloodCancerUK has given you the support line details, please do use it, they are all lovely.
I also think that being on your own is so, so difficult and really isolating, especially as you are separated from your 2 lovely boys, you are no longer the Musketeers.
I am not surprised you feel an emotional wreck and I know you want to pull yourself out of it and that time will come if you keep looking after yourself and seeing your boys when you can.
I hope you can get to Your Voice again this week.
Don’t forget you are never alone with your forum family here.
Take lots of special care of yourself
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Hi @Jay I’m so sorry to hear about the tough time you are having. It must be awful not having your sons living with you. I can only imagine how much pain it brings. I hope for happier times for you and for them.
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Hello Jay and Everyone - My story is similar to your own Jay and I am in remission for Diffuse large B-Cell Lymphoma which I had in five different sites including my lung. I am pleased to say that I am heading towards the two year mark from my last chemotherapy. Like you I lost a close family member during covid of 2020 lockdown whilst undergoing treatment and know how devastating it must be for you as well as your situation with your lovely boys. I have learnt to look outside my own world and into the lives that others are living and your optimism and spirit is a true inspiration. Today when we see the horrors of the Ukraine war, desperate mothers, terrified children and heartbroken fathers leaving their families, it gives me a new strength to use each day as best I can. I send you and all on the forum my warmest wishes for your good health and well-being. Pat x
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Morning Pat , Thank you for your lovely letter , Because of my immune system and covid , I tend to stay in , so sometimes I feel isolated so getting your letters mean a lot to me , I think of all of you as my pen pals , I never gave myself any credit for bringing my 2 son’s up , till I was taken into hospital , I have never been separated from my boys for any length of time , so being in hospital for 16 weeks , I really felt it , some days I would say I missed my boys that much it was worse than having cancer and my chemo , I’m home , still not strong enough to have them home yet , but I can see them whenever I want or have them for an overnight stay , as you were saying about the kids and families in Ukraine , my heart goes out to them , hate it such violence and the kids don’t understand , like cancer it’s here to stay like covid , same as I don’t think we’ll get to the world peace , but it would be nice to have all 3 under control , Although I got the news I’m now in remission I still have good and bad days , the cancer forums are my only support , I have neuropathy in my hands and at times I feel even cutting up my food is hard , When Andrew comes home for the day he loves apple and bananas , trying to peel and core it a job in itself but I do it , I’m determined to get through my recovery , I tell myself I kicked cancer’s backside so I can do this , I hope I haven’t bored you to much , stay in touch , take care , keep safe and well , xx
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Hi @Pat1 great to have you on our forum and you have already shown the value of it.
Yes, it must be so devastating losing a loved one, exacerbated so much during Covid times.
Please keep posting as I look forward to hearing more about you.
Look after yourself
Good Morning Jay, Erica and Everyone - Thanks so much for your replies Jay and Erica. There isn’t much to say about me really Erica, I am a 65 year old Wife, Mother, Grandmother who was knocked sideways by my diagnosis as I’m sure you all were, but we are braver than what we knew and stronger than what we thought having been through our illness. Jay, you should give yourself every bit of credit you can find in enormous great big chunks for the Mother that you are. I cannot imagine what it must be like for you and I am so very sorry for all that has happened but better days are round the corner I am sure. You mention about your emotions, oh my goodness I can relate to that … all I can say is just let it out and writing, talking and sharing are great healers, all shared experiences! I know that I am about a year or so further on from you but I can tell you that it does get better although I do find myself much more emotional now which is something which will probably sit with me. I too had neuropathy and that has improved during the last few months. I found remission much harder than treatment, I was lucky enough to find that the treatment was helping and learnt to embrace it, if that is not too strong a word! Remission is a different story, you worry that every pain is the illness returning. What I found really helpful was to do my own monthly checks at the beginning of each month where I would record, bp, weight, peak flow etc. really anything I could think of including my well-being. When I got different pains I was able to check back and think ‘oh yes I had that before’ and I have had a clear scan since. I found that during the early weeks and months of remission I was plagued with aches and pains but for the most part it is a lot better now. I completely understand your reluctance to go out and feel isolated, but if you have a friend, neighbour who will just do a walk around the block with you and have a bit of a chat I am sure that will help. On Saturday my husband and I tested positive for covid despite being so careful, no cafes or restaurants for us during the last two years. We are ok my symptoms are much more mild compared to my husbands thanks to my fourth jab. I have been in touch with my lovely special care nurse this morning who has arranged anti-viral drugs should I need them. You so can get through this Jay but don’t be afraid to ask for help. When I was 15 I lost my Mum and Dad and the kindness of strangers at that time has stayed with me all my life, sometimes our own struggles and heartaches are gifts for others. Love to you and all xx
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Oh @Pat1 lovely to hear more about you. I really related to so much you say.
Yes, @Jay as @Pat1 says we are all on this forum a lot stronger than we give ourselves credit for.
However I am also a lot more emotional than I was before diagnosis. I watched Brief Encounter the other day and that was a box of tissues gone.
I also find writing about what is going on for me helps me.
Sorry to hear that you and your husband tested positive for Covid, it really is the ‘luck’ of the draw. You also show that the anti-viral system is working.
It must have been so, so hard loosing your parents so young and you really show the inner resilience you must have had at that young age.
Asking for help and receiving it I find is so difficult but yes, I remember the kindness of others for years and years.
Take care all of you
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Afternoon Pat , Hope you are having a good start to the week , I started of with Sunday going to the cinema through the carer’s center , I went to see Uncharted , was a fab film , also I exchanged numbers with 2 lovely ladies , Nicol’s and Mary , so a film and hopefully 2 new friends I came away happy , Monday Tai chi Wednesday getting a massage , Thursday getting my nails done then Afternoon my consultant appointment see what he’s gonna say , hopefully all good news , Friday Beatson for a haircut and my new wig , Monday craft group , Wednesday computer lessons , Friday Tai chi followed by carer’s center cinema again to see Batman , I really need to work on my emotions and my confidence , I’m missing a part of me and I don’t know what but I know I get very emotional easy , easier than before my diagnoses , but my Sister said like everything it’ll take time , Last Saturday I met her in Largs and we went for Lunch and a walk around the shops , I got 2 new coats as nothing fits me , sis talked me into getting the coats as I’m not allowed to diet till I’m out of my 24mths , so size 12 I’m now a 16-18 and really feel it , so not happy there , but what’s weight compared to still being here a small price , I will 1 day hopefully be able to shift it Xxx
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Hi Laura , Afternoon , I hope you are having a good start to the week , this week and next week I’ve got a bust week so probably be knackered by the end of it , I’m finding myself being more emotional and cry at almost nothing , it’s better out than in , my pal Tina says let’s it out get the stress away , Derek my cousin says man up keep it in and don’t show your emotions so you can guess when I’m with him I’ve got egg shells with me 
, Through the carer’s center Sunday passed and on the 27th we got given cinema passes so been to see Uncharted was a fab film and next film is Batman , have a great week talk to you soon Xx
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Hi Nichola , Afternoon , hope you are having a good start to the week , I took a leaf out of your book and through the carer’s center we got tickets to go to the cinema , so I saw Uncharted a fab film next weekend Batman is on , not a Batman person but everyone says it’s good , cinema drink and popcorn all on the carer’s center , so I’m taking Gary with me to see Batman , also starting Tai chi and on Friday getting my. 1st haircut and my new wig Xx
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My husband is going to see Batman on Thursday. I’ll let you know why he says. He has every film ticket for every film he has ever seen!
I’m glad you took the plunge. It’s sounds as though you e been really busy. It must be nice to be doing some of the things you love again?!? X
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Evening Nichola ,
Yeah felt ok also , the carer’s center sent me an email with the dates so I went for it , glad I did as I met 2 lovely ladies , we’re going to try and meet up for a catch up and cuppa , baby steps , don’t do to much , so starting with Tai chi and computer lessons as I really need to get to grips with my laptop , at the moment I do everything on my phone , zoom meetings are a nightmare as I can only see 1 person at a time , so got a plan gonna put it in motion , busy week so no time to think negative thoughts , need to focus on the here and now and what my future looks like Xxx
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Always good to have a plan X
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Hello Jay lovely to hear from you again and my goodness you have been and will be very busy, don’t go overdoing things as you said before small steps, but well done you. In complete contrast we are still not going far, day 13 of covid and I am still positive, although hubby was negative from about day 8. But it’s a beautiful morning and there is lots to do in the garden so I shall be out and about today pottering. I completely understand what you mean about missing part of you. Whilst having treatment during the first lockdown of 2020 the world completely changed for us and everyone else. No cars on the road, no planes in the sky, unable to see big children and little children and friends, and to cap it all when I looked in the mirror the face looking back wasn’t the same face either. No hair and rapid weight loss of three stone, I really had to dig deep to remember the person I once was, and of course people treat you differently because of your illness. It’s little wonder that our confidence took a brutal bashing - I take a little time each day now to remember who I was in my working life, as a Wife, Mother, Grandmother, Sister and friend, and to remember that we have been a lot of things to a lot of people. Confidence is returning for me, albeit slowly, my brother sums it up when he says ‘you still haven’t got your gob back!’ A bit on the rude side but I understand what he means. Enjoy all of your outings and activities Jay, don’t overdo it but I’m sure they will make you stronger. Love to everyone and enjoy the sunshine over the next few days. xx
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Morning Pat ,
I’ve been a wee stranger to the group , I wasn’t feeling up to doing anything till I gave myself a shake , I hope you’re covid symptoms don’t linger to long , touch head … Bare head… For good luck I don’t get it , apparently it’s rife again in Inverclyde , but with me not going out not sure , going to get my nails done to cheer me up then consultant appointment this afternoon , I’m trying to be positive and 1 day at a time , some times that’s hard , I keep thinking of the then me to the now me , and I get the whole looking in the mirror , I couldn’t do it for 13 weeks after I lost my hair and everyone was saying I was daft I should’ve embraced the baldness , fine for then to say they never went through it , Boys are looked after so now time for me , getting a new wig tomorrow , so I’ll be strutting the lights , yeah don’t think so maybe 1 day , build on me and my confidence , you have a good day and I’ll tell you next week if I got up to anything
Love Jean x
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Hi @Pat1 your brother summed it up so well !!!
Sorry to hear on Day 13 and you are still testing positive for Covid.
As you and @Jay realise it is one day at a time and one foot in front of the other.
Look after and be kind to yourselves
I can see that you have found your inner strength @Jay :-). I’d recommend The Duke if you go back to the cinema, I loved that, really charming.
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