I am not surprised that you have those mixed emotions @Lo1 you are pulled in every direction. You are certainly not over the top and I am sure many others feel exactly the same. I am sure you have had over your fair share of shielding.
I think you have done well saying your needs.
I also think that ‘healthy’ people sometimes have no conception of what it is like to live with blood cancer and our how we have had to live shielding, our health challenges and fears. Even if we try to educate some people they really do not understand.
I really hope you can relax on the day.
Please let us know how it goes for you.
Look after yourself
Hello everyone. I hope you are having an easier time than I am! Hope you don’t mind me sharing my woes with you. I had planned to visit my mother (who has dementia) and my sister who lives with her as her carer on Boxing Day. I was in tears Christmas Day evening, dreading Boxing Day, because I find it SO hard to make the journey and see them in such distressing circumstances. Boxing Day morning I just knew I didn’t have the physical or emotional strength required and so had to cancel. Now my sister has been in tears, saying that the only thing that got her through Christmas Day was the thought that she was going to see me on Boxing Day - now I feel even worse and under even more pressure to see them! Help! Thinking of you all. Willow X
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Oh @Willow what a dilemma for you. You have done what you felt you needed to do for yourself.
Also your sister is entitled to say how she is feeling, those are her feelings.
However you are very naturally now having those feelings of guilt which are making you feel worse and more pressurised.
Perhaps feeling really pressurised is going to make it even harder for you to visit.
It might be worth just giving yourself a bit of time before doing anything.
I believe dealing with what personally stresses me, pressure and fatigue are my key symptoms that I struggle with.
However I would be just like you and taking those feelings of guilt and pressure on board, perhaps we are just human !!!
Be kind to yourself and keep posting that is what we are here for. xx
Thank you so much @Erica. You have expressed exactly how I am feeling about it. I think your advice is wise, I shall give myself a bit of time before I do anything. Warm wishes. Willow x
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Hi @Erica, @Willow, and all the lovely people on this thread. I was so looking forward to this Christmas, having been diagnosed with mm last Christmas we didn’t put up any decorations or celebrate, just lots of tears and uncertainty. After a stem cell transplant in August and a cancer free bone marrow aspiration we were all set for a little happiness this year. I was so looking forward to my son coming home from Uni.House was super decorated, his room was completely updated, lots of nice food etc. He arrived and was very keen to see his friends so I didn’t want to stop him. Just be careful, wear your mask, don’t forget how at risk I am, I said. He came home, very drunk at 4 in the morning and spent the next 4 days ill. He then had his 3rd covid jab and was ill for another 2 days. Christmas Eve he did a lateral flow test which was positive. Subsequent PCR test positive so Christmas ruined and now I’m just worrying and waiting to become seriously ill with covid. On day 3 now waiting for that double line on the lateral flow test. Only been able to have 1 covid vaccine as you have to wait after the transplant so this Christmas has been more tears and worry. I know there are thankfully more medications for us now but I feel so worried for me and my younger son and angry with him. The whole family has had yet another disastrous Christmas. Sorry to vent but no-one else will understand. My mother in law said my son was in the dog house and I though how can you say something so light hearted when my life is at risk.
@Franko sorry to hear that your paraptoteins are rising again, this must be such a worry for you, hope that your medical team will be able to get this back under control.
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Oh @Lyn99, I just don’t know what to say.
As a mum you must feel gutted, angry and let down on so many levels.
You have demonstrated so clearly that sometimes other people just don’t understand how vulnerable we feel.
We understand so please keep posting and vent as much as you like, we are here for you.
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Hi @Lyn99 sorry to hear you christmas was spoilt. Mine was as well. I have non hodgkins lymphoma with the lymphoma on my lungs but on watch and wait for last 2 years. I caught a chest infection from my 1 year old grandson and on xmas day had an asthma attack and was taken to hospital by ambulence. Good news covid negative but bad news chest x ray shows increased lung tumours caused by the lymphoma. Was told by a and e doctor to request a repeat x ray from my gp. I suggested a phone call to the haemotologist would be better! Phone call to cancer nurse and still waiting to hear. Cancer clearly takes a holiday around xmas as well. Merry xmas me. Am starting 2022 with more anxiety.
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Sorry Lynn that you have all this worry at what was meant to be a good family time together - I had not been pondering yesterday (for totally unrelated reasons) at how selfish we can all be when young, we don’t realise it at the time but the drive tends to be very much ourselves and what we want to do and a determination to do so, put pressure in from peers and that is more so - think that’s where your older son is and I feel for you - as yes no one gets our risk and how it is to carry that risk in this pandemic and we have done so now for a very long time. You now have the worry these days to see if you have picked up the virus, I hope very much that is not the case and there is every chance you will not have - but I know the anxiety you will be going through, we will all feel for you.
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Sorry Mandi for all you are dealing with just now and hope you get some input soon from your cancer team - as yes contact in holidays can be sparse - and those “few days” are an eternity if you are the patient waiting for help and assistance - do hope today you will get some help. Keep us posted
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Hi @Lyn99, I’m sorry to hear about your Christmas. Like @Erica and @Jilly20 have also said our children can be very self centered at your son’s age. I remember when my son was that age he did exactly the same thing. I’ve also found that in-laws can be really insensitive, you feel like saying to them if you can’t say something supportive then keep your opinion to yourself! I can understand the worry which you are going through now and I do hope you keep well. Take care of yourself. x
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Hi @Mandi713 , I hope you are able to speak to the haematologist or the cancer nurse and as soon as possible so they can arrange for you to have the repeat x-ray. Take care of yourself x
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Hi @Mandi713 it must have been a scary time for you getting an asthma attack and a chest infection and increased lung tumours diagnosis on Xmas day, even ambulances are scary to me.
I am not surprised that you feel that you will be starting 2022 with more anxiety, the waiting is the worst…
The Blood Cancer UK support line is there for you, except bank holidays, if you would like to chat.
Don’t forget that we don’t close down over bank holidays and there is always someone about here .
Please let us know how you get on and be kind to yourself.
@Erica, @Mandi713, @Jilly20 @Kirsteen. Thankyou for your kind words, it’s nice to know that there are people that understand the uncertainty and anxiety that we have to deal with in our lives. Yes younger people are self centered on occasions. I guess you become more aware of how precious and tentative life is as you get older and wiser.
@Mandi713 I’m so sorry to hear of your asthma attack and subsequent chest x ray, I do hope you hear something soon from the nurse and get that important support.
I’m on my 4th day lateral flow test, negative so far…
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Hi @Lyn99 That’s good news that your 4th day of lateral flow tests and still negative so far.
Please keep posting and be kind to yourself, we are always here for you.
I worked Christmas day
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Thank you so much for working Christmas Day, @Walburd, what would we do without people like you. Thank you again, but please look after yourself as well as you look after others.
Thank you
Babies don’t stop coming because it’s Xmas
Am working new years day too
Am trying to look after myself
Was very stressed the other week awaiting my scan
It was work what stressed me out though
All I asked was ro tonight 1 hr earlier after anight shift so icould attend my haematologist appointment
Had to go to HR RCM and matron
Disgusting
Had to do all my appointments in my own time so far
Anyway I have fatty liverbdiaease and a slightly enlarged spleen
My levels are down so no venesections for a while
My sister currently in hospital so trying yo sort her out
Not heard ànytjing from critical illness cover yet
But my NZ pension in.process so that should get mortgae Down so I can look at my hours then
Otherwise apart from a cold not xovid am doing OK
Do get tired alot
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@Walburd I am not surprised you get tired a lot you are juggling so many plates in the air.
please look after yourself as well as you look after others, you are a special person. xx
Hi I’m new here my name is Steph, nef is my nickname. I had my first round of CPX chemo on 17 November and had to stay in hospital was discharged Wednesday 22nd, I tried to fit in so the last week with my 2 children before I have to go back in for my bone marrow transplant and yesterday was told that now my transplant won’t be till February. So I feel very overwhelmed, anxious and exhausted. I had the most wonderful Christmas and hope everyone managed to enjoy theres.
Keep going.
Happy new year
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Neffy, so glad you made some good Christmas memories. Illness is tough when you are a parent. Take the support offered from those around you, being a Mum is such a joy it is too easy to ‘go it alone’. I really wish you well with your treatment. Take care with love Grandma Jo
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