Will it ever be safe out there?

I am in my early 70s, have CLL and am on Watch and Wait. I thought my husband would be supporting me while I go through CLL. However, he has been diagnosed with advance Prostate Cancer and I will probably outlive him. We do not have any family (kids, siblings) or other relatives that live near to us and our friends also live a long way from us, mostly in different parts of the country. We do not drive either.

My question is this. I feel I will be in lockdown forever and eventually by myself. However, I will need medical services especially to do with my eye sight. I have not had a new prescription for glasses for a few years and I know I have a degenerative eye disease and need stronger glasses. I also have gum disease so must see a hygienist for this regularly. I also need a new partial denture as well.

As I do not drive or feel safe to take a bus or cab to get to the dentist or optician, will it ever be safe for me to use these services again, let alone resume a life? I would love to go back to the theatre, for example, but cannot see that happen or even to my club. I use public transport to get out and about but how can I feel safe when there may be anti-vaccers or those in the early stages of Covid on public transport, all squashed together?

My hospital support nurse may be clinically efficient but is cold like a bowl of ice-cream, so cannot talk to her. I do not know if I need words of encouragement or do I have to now accept a life of being locked-in forever more.

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Hi @Lulu999 and welcome to the group. I’m really glad you posted. Wow, you have so much going on and I’m not surprised that you are feeling the way you are. It must be ever so difficult with both of you having a challenging diagnosis, in terms of supporting each other.
I understand your anxiety around visiting the opticians. However, I have been to appointments and have actually felt really safe. I realise that my experience probably won’t reassure you and it would be good to hear about others experiences to.
I really hoping that we all get some kind of normality soon and that we can start doing the things we enjoy again. Seeing your friends would be so good for you. Do you manage to keep in contact with them in different ways?
I’m sorry to hear your clinical nurse isn’t supportive. What about your husbands medical team?
I am worried that you are not accessing the health support you need and wonder if it might be worth giving the support line a call to talk things through. They are great and will be able to point you in the direction of the right support as it may be something you could benefit from now, and in the future. I’ve used them before and I would recommend it. Please keep posting. We are all here to support you :blush:

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Hi @Lulu999 a great big welcome to our community forum, you are now not alone we all support each other on this site. If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Wow you have have a lot going on and Covid on top.
You must be feeling so isolated especially in lockdown.
I am also in my early 70’s and have CLL, diagnosed in 2003, and have always been on watch and wait.
My husband is fairly well but I jolly well hope to out live him, sorry, that was my sense of humour.
I have gone on buses to hospital appointments and personally I have found them very safe as was the hospital.
I take responsibility for wearing a mask, hand sanitising and distancing myself from others.
I am sorry that your hospital support nurse is not approachable, can anyone else in your medical team help.
If your husband does not mind his medical team might be helpful to both of you.
I also need to go to the optician and dentist and from what I have heard they have their act together now. Also hairdressers will be open soon.
Please take care and keep posting I look forward to hearing more about you.

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Hi Nicola,

Thank you for your response. I suppose it is hard for me to feel safe and getting ill a lot myself does not help matters. Two weeks ago it was a severe bout of vertigo and I also pulled out my neck and could not move my arms up in the air last week; besides this also getting mosquito bites - and in the UK in March!! During the last year, have also had sinusitis, tinnitus, temporary deafness and mouth ulcer problems. I feel I am in a slow meltdown. I just feel that with everything going on, the coronavirus is at least outside my home - have enough to cope with inside my home. Besides all my health worries and that of my husband, we need work done in our flat and am scared to let people come in to fix things, other than under the most important circumstances like when we had some electrical problems which were too dangerous to neglect.

Yes my husband’s support team are good, but I have had to move heaven and earth to find a volunteer to pick up his new tablets from the hospital pharmacy - they are not available at any chemist. On the eighth attempt, found a charity to do this monthly for us, as we are shielding.

I do email and sometimes phone friends, but it is not the same as seeing them. I just feel I will completely have to give up my “old” life like attending a social club where I use to give lectures, or going to the theatre or cinema if we ever get rid of Covid. However, Covid seems to regenerate itself like Dr. Who, so to me the future does not look good as somebody with CLL.

Yes, I will calls the support line, who will no doubt advise me on stress management but they cannot make my husband well or make it safe for me to go to the theatre or to my club or to see friends.

Thank you for your support, regardless and stay safe.

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Hi Erica,

You have had your CLL for quite a long time. I had my diagnosis in 2011 and was told I might outlive the disease. If I do, it will be small consolation being around without my darling husband for company and support and love.

Last year in the summer, I got my hairdresser to come into our communal garden to cut our hair and would dearly love to have highlights back in it. However, on the plus side, I have become a quite decent haircutter, both of my hair and my husband’s - sort of like the 2nd World War saying “Make do and Mend”!

I wish I could be as optimistic as you sound. I feel I have been given a lousy hand of cards in my life, but I know there are people in worst situations than me. However, it is of little consolation. My life will never go back to where it was before and I will end up without my darling husband.

Having a horrible support nurse does not help matters either. I have been calling MacMillan Nursing both for support about my CLL and about my husband’s prostate Cancer. I was dumped from seeing my Haematology Consultant yearly a few years ago - so never get examined - only have to take a blood test yearly and get a phone call about the results. She positively makes Margaret Thatcher sound like Mother Theresa.

Stay safe and well and thanks for your concern.

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Oh @Lulu99, we also live in a flat and I have also become a hairdresser, actually again as I trained to be a hairdresser in 1966, although only practiced for about 18 mths.
I have also had vertigo twice in the last year, it is really nasty isn’t it.
I have to say mosquito bites in March sounds unfair to me, also I find I really need to get infections sorted out with GP quickly.
We have had to have tradesmen in a few times in the last year and when I have explained my situation and needs they have been very appropriate.
Our chemist does not deliver either but my local council has a list of support agencies on their website and if I cannot get it on Amazon or Sainsburys we don’t have it.
Yes, I really miss that human contact and interaction. Let’s hope we will feel it is safe to meet up responsibly with others soon.
I have found that Macmillan are wonderful. I also was referred back to my GP by my consultant, but could be fast tracked back if my GP was concerned. I have 6 mthly blood tests with him GP and if I want a review I have to ask for one with my GP.
I ask for and get a copy of my blood tests so I would know if something was amiss, they do fluctuate though and if I had symptoms I would go straight to my GP. It is actually easier for me than going to the hospital.
It sounds as if you have been offered stress management before, I found it helped me, but it is a personal thing, as I do not deal with what personally stresses me well and I get fatigued and now burst into tears, it is all too much.
Please keep posting and tell us how you are really are and what you used to give lectures on and have you any ideas for lectures in the future when it is safe to go to clubs etc. again, we are here to support you.

Hi Erica,

I find that stress management helps for five minutes, but then another grenade goes off in my life. I have had all kinds of help for my own anxiety problems but at this stage, just use MacMillan if I have any queries.

I belonged to the University of the Third Age and had just given lecture no. 2 on the subject of Film Composers from the Golden Days of Hollywood. Of course that now seems so long ago and I cannot see me being in a room full of people anymore. I also attended the U3A quizzes which, of course, can no longer function due to Covid.

Besides having to have emergency workmen in when twice we had a lighting/electricity problem and our oven died and a window got smashed, we need a lot of work done in our flat. For a start, one room has a damp problem and a workman would need to do at least a week’s worth of work in this room alone. There are other problems that need fixing as well. I would not feel safe with somebody in our flat for that length of time, nor do I think my husband could cope with it, due to his stress from Prostate Cancer. Meanwhile, my flat falls apart and I make-do and mend, although at my age, it is getting harder to do even the slightest bit of decorating, but I soldier on as best I can. I am lousy at DIY and my husband is even worse!

As I said, I will never feel safe.

Take care.

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Hi @Lulu999 Your lecture sounds fascinating and I bet it went down well…
I am a member of our U3A and I was ‘book monitor’ and as you can tell it was a prestigious role !!! I supplied and people donated books and others took them, borrowed them etc. and I was responsible for displaying them, but it entailed a lot of carrying books so I am not going to carry on when we reconvene in future. I go to their monthly meetings and quizzes. I am the one that answers the pop music and TV questions. I also do pilates with them.
It must be very demoralising having so many jobs on your ‘to do’ list because you are living with them all the time in your flat. My decorating days are over too, especially like you being prone to vertigo.
Take care and we are always here and the support line is too.

Hi @Lulu999 as someone who had a terrible Clinical Nurse Specialist too know exactly how you feel. All that you have to deal with what is happening to your husband and the practicalities of the Covid world for people like us too. I do hope that you are able to find a way forward that works for both of you. I’ve opted to go out when I’m allowed whilst taking precautions and following all of the rules. I can only speak from my own perspective, but once I’ve done something once it doesn’t feel as scary the next time I do it. Do check in with us whenever you need to and let us know how you are getting on.

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Hi Franko,

Thank you for your comments. I just wish I could speak to my Consultant and not that awful nurse. She is like a guard dog and I feel I cannot speak to anybody from my haematology dept, so contact MacMillan Cancer instead.

About going out, would love to go into a shop, get some small change even, get my hair cut or go on a bus, but I just do not feel safe. Both my husband and myself do not want to take chances to get each other ill. I do take walks for a half an hour (exercise) only when I am able - I also have other health problems that stop this like osteoarthritis and vertigo, etc. which does not help matters. However, I understand that some kind of test is being conducted to see how people like me, e.g. with CLL (perhaps other forms of leukaemia and cancers??) are doing but I am not sure of the exact details. Apparently MacMillan, who are not running these tests, will be giving out details of the results later in summer on their website. I suppose I am looking for some kind of security and feel very insecure, not just because of Covid, but my husband’s advanced prostate cancer, let alone my own CLL.

Meanwhile the end of last week and early this week, my husband had/s two different blood tests, the results of these plus the result of his CT scan we should know about later this week. I also hope that the voluntary organisation I contacted keeps their word and picks up and delivers his pills from the hospital pharmacy to our home also at the end of this week - not available from chemist. We do not drive or take cabs or busses, so am now relying on a voluntary organisation to pick-up and deliver to us certain of my husband’s medications. This week alone is enough to keep us on edge.

So you see I have so much on my mind re: my husband’s health, but at this stage, I come second. It is later on when I will be alone that I fear and that I will never be safe going out. It is a terrifying and sad thought. I just wish I could wake up from this nightmare.

Take care and look after yourself. Thanks

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Oh @Lulu999 you have so much going on and whizzing around in your mind.
It is so difficult to feel secure in what seems a very insecure world.
I also have CLL, diagnosed in 2003. I suppose the thing that I have realised over time and I have heard others say it in other situations is that all we actually have is now, I never really realised that there is no certainty in the future. I always felt there was, I felt my future would take certain natural stages, but I know realise that was never so.
I find it really difficult to work out the realistic risk out there.
None of us could have predicted the events of 2020 so who knows what the future will bring.
Your anxiety and fear really shows through in your post and I know you say that you come second, and I know it is not for everyone, but I told my GP how I was feeling and thinking and got some counselling help, which helped me.
Macmillan, and I know you say you are in contact with them, can also be very helpful on 0808 808 00 00 7 days a week 8am-8pm
Please let us know how you both get on and perhaps think about spoiling yourselves, we are all here to support you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk. Take care.

I am so sorry that you have such a heavy load to bear. My husband was diagnosed with testicular cancer just as I was improving. It was a very scary time. We were so lucky as the prognosis was very poor at first due to expectations due to his age and the type of cancer they suspected. Our dreams came true when he was told he had the ‘young man’s testicular cancer’ and not what they feared. He got a bounce in his step and told everyone, who would listen, that it was because he was so young really!!
After an operation he is just being checked every three months with no expectation of further problems. I remember the fear and how busy my brain became. It was so hard to switch off.
What I would suggest to you is to contact Age U.K. ( I think that is their new name). When my parents were elderly they were very supportive to their friends who did not have family. They had some handymen employed and retired helpers who had been builders who were willing to help people. Sometimes for a nominal cost they would do some jobs in the house. It would be worth an approach to explain your limitations and to see if they can offer that help in your area. It was good in Surrey but I do not know how varied it is in different regions.
Do take care and know we are thinking of you.

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Hi @GrandmaJo. Some good advice there. Hopefully Age UK may be able to offer some help. How have you been?

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That sounds awful @Lulu999. Do make sure that you make time for your own needs and be kind to yourself. I’m sure that you’re a great support to your husband.

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Hi Grandma Jo,

I found out that Age UK has locally a list of people that do different kinds of handyman and I hope to use their site.

I am so glad that your husband is doing well with his testicular cancer. You are so right about not being able to switch off. This week has been a nightmare for us. Despite lockdown stightly easing a bit at a time, it feels like any form of easing is not being addressed for people like me with CLL. I feel so very invisible to the government and I bet I am not the only person who feels like this.

Meanwhile after the Registrar screwed things up for my husband, he had to have a further blood test re: his advanced prostate cancer. My husband’s ankles and calves had swollen up like tree trunks. He had this blood test originally last week, but the Oncology Dept could not find the form the Registrar left at Oncology Reception. In the end, the Phlebotomist winged it, but the wrong blood test was given!! My husband had to go back to the hospital again for the proper blood test. (He had 3 blood tests in one week actually, because they also had to give him a blood test to see how his new chemo tablets are working.) At least, now, this swelling problem is being investigated after several weeks of delays. However, what is not being investigated is he has developed light pigmentation blotches on his skin - so far one under his jaw and seven on his back. Do not know if it is from the hormone injections, his new chemo tablets, having his vaccination the day before a hormone injection or what. This needs to be checked. Additionally - and here is the good news - his PSA? number has fallen to a normal range - 4.8 - originally is was 850.

Perhaps I might be able to relax a bit and not try and spend my time sorting out different things when the hospital screws up. So far I have a list of at least 12 screw-ups to do with my husband’s health treatment. I know the NHS is stressed out, but my first concern is keeping my husband alive. Tomorrow (Friday), hopefully the volunteer will pick up his new chemo tablets from the hospital pharmacy and deliver them to him. In a couple of months his Consultant will review the results of all his treatment.

I now pray that his cancer will stay under control, the hospital will not screw up (which it has continued to do since he started treatment) and I also hope to know sometime if it will ever be safe for me to go into a shop or on a bus and live a normal life.

Thanks for your concern.

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Hi @Lulu999, everything is a struggle isn’t it just when you are worn out with the worry, stress and practicalities of it all.
I have found celebrating the little wins helps us like your husbands PSA falling to a normal range this test.
Well, another little win is that so far Covid numbers are continuing to fall.
Just pat yourself on the back you are doing really brilliantly and keep posting.

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Hi Erica,

You are not kidding - yes, everything is a struggle and I am so tired and exhausted. Yes we are going to celebrate my husband’s PSA figure tonight - will be having ice-cream after supper!! I just have to try not to worry that my husband’s PSA numbers going up again in the future and the Registrar will not sort out the swelling or pigmentation problems my husband has at present.

Thanks for your comments.

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Hi @Lulu999, oh, ice cream sounds a brilliant idea.
From what I have heard that PSA numbers are like my blood tests, they fluctuate.
I believe like blood cancer that they are not the factor they take into account into treatment.
Yes, enjoying the little wins is so so much less stressful and exhausting than worrying !!

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Sounds good @Lulu999 . I remember when I came out of hospital from my transplant and went back to work, sitting on a bench outside work having an ice cream for breakfast. It must be very difficult for you both but you can set your own rules to some extent and take your pleasures where you can find them.

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Hi Lulu999
I hope things are progressing for you and becoming clearer. Some treatments do affect skin pigmentation. They usually list it in the tiny print on the paperwork which comes inside the tablet box. It may be that sun screen is more important to protect the skin even in winter.
I had a funny side effect from my chemo treatment, listed in the one in five thousand group on the paperwork, in that my grey hair which was just beginning to start at 62 years of age turned dark again! I looked one day in the mirror and thought “ I might get lowlights done to my hair next time I get it cut”. Then when the haircut was due to be booked “ actually it is not too bad.” Then by the time three months had passed - no grey hair!! How weird is that? I did feel that I deserved a bonus for being brave during chemo but never really expected one. Even now my hair is much darker but a little grey is creeping in.
Send our best wishes to your husband
Grandma Jo

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