Easter

Hi fellow travellers

I have not posted for a while as I have had a "slight" setback and did not feel I wanted to be yet again a moaning Minnie. Anyway over the last month I had been feeling very very depressed, no appetite and generally very low . I saw my oncologist and for the first time ever she saw me as not positive very tearful and completely beaten. She has always said how well I looked and here was sitting with her and the trial nurse in tears , giving up in pain etc etc. Not me at all as I have always felt positive that we would find a way of not curing but sensibly living with the disease.

Anyway , she gave me some morphine long lasting and I went home prior to next dose of chemo.Next day I woke up and was sick. First time ever. I dutifully rang my dedicated nurse who said "ring your GP" I rang explained how I was and she said" ring 999"

Sick in ambulance scared etc.

My veins are awful so I have a long term picc line which is used all the time. However A&E did not use so I then had the ordeal of them trying to find a vein for a blood test and so on . Hardly any luck , loads of attempts and finally they got some blood.

Doc decided I had an "infection" and sepsis feared. Taken in as in patient and test galore and drips galore .Finally after two days found an antibiotic which worked. Pumped in three hourly stints into my PICC line day and night. The nursing staff were lovely and I spent most of time in tears . I was worried about my husband who is 81 and could not drive in to see me as too nervous of driving so all on his own . And so very lonely with no visitors at all just nurses.

finally infection and temperature started to come down. Blood pressure going up and up so worried about home and husband alone. . oncology doc says if they can get my temperature level I can be sent home with oral antibiotics. One of the nurses encouraged me to remember the faith I enjoyed as a child and stayed with me and said a little prayer to help me heal and deal with the misery. We have just moved house so have no local friends and family have lots of young children thus not allowed in hospital ( or live too far away)

Next day I told my friendly day nurse I wanted to see the doc and go home at once. Doc finally agreed so sent home via hospital transport. Relief but felt so terribly weak I am pretty helpless.

They gave me letter stating I had had sepsis because my PICC line had been infected and of course with chemotherapy, ones body has no fight of its own. New line finally inserted and old one binned , So finally made Easter Sunday at home. Have oral antibiotics to complete course .

The power of prayer pulled me though and so I thank God and all the wonderful medical staff for all the help they gave me. I feel very washed up but am ready to start the chemo fight all over again when I get the strength to drive the 100 or so miles I have to get to Addenbrooks for my on going treatment.

My faith is renewed and I can face the next onslaught of treatment. To all of you fighting this awful disease, I hope you enjoyed Easter, keep positive and trust in God to help when all seems lost. I am not a regular practising Christian - Christmas and Easter is me - but truly He helped this awful last few days and I know you all will get strength to carry on wth the fight. I know there are sometimes miracles lets hope that all of you reading and myself are some of the successes.

God bless and much love to you all. Irene x

18 Replies

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  • So sorry to hear what you are going through Irene. You sound a lovely gentle woman. This disease is so complex and cruel. If we only had to deal with the medical condition it would not be so bad, but having to deal with loved ones, distance and the disease's psychological effects, I think it would be so much more manageable. I hope you feel more positive very soon and you should never apologise for being a 'moaning Minnie'. So pleased to hear you were treated with respect by the medics. Love Carole H 😊 x

  • Irene love, I just wanted to say hello to you, my sister is battling this monster. You have me worrying about you with the words that you will continue treatment when you are able to drive. I wish I was closer, I,m in Pembrokeshire. Irene, there are alternatives to enable you to get to the Hospital, have you told them you need Hospital Transport?. There are also Voluntary drivers. If you phone the Hospital you are under they should be able to point you to the right people. The N.H.S are not very good at explaining the help that is available to people, P.A.L.S ( patient advice liaison service ) will certainly help, they are in all N.H.S Hospitals, so again ring Addenbrooks. I hope you are feeling a little better today. Thinking of you, marie. x

  • That's a lot to deal with. Do you have a specialist nurse to help you?

    Wishing you better days ahead

    LA xx

  • Oh Irene, you have had a horrible time and so stressful for you. I am happy to hear that you are home now, and that your faith helped you through this. We don't always know where we get the strength to fight this thing, but I am glad to know that you knew where to turn for help when you needed it.

    Jenny

  • I was referred to Macmillan but nobody has got in touch

  • Well I feel comforted by all the good wishes flowing in to me from all you ladies . Thank you to you all and thank you to God for helping me fight on. A bit of remission would not come amiss please?

  • Happy Easter. Well done you. With my social worker hat on, ( though can't work at present) I would advise you to contact your local authority adults social services for local advice and information. If your husband is your carer he could have a carers assessment or vice versa. One outcome of that could be respite care. Also, either of you could have an assessment of your needs, if these needs are deemed complex. Or, if neither of you needs lots of care, you would be signposted to local voluntary services and agencies, by social services: Age Concern is a great organisation. As someone said, the hospital's PALs service also is a good source of information. Plus, there's also the benefit called Attendance Allowance. I use my PIP, ( Personal Independence Payments) for taxis, when I am having chemotherapy. It is non- means tested. All the best

  • Hi Irene, So sorry to read about your battle but glad to hear you are home, Please never feel you are moaning Minnie , we are here for you at any time if it can help in any way no matter how small. I'm here in Australia so I'm not aware of the support you have, but I've notice the other lovely ladies have given you advice on the support you can connect please do you can not do this on your own.

    Sending you all my best wishes love Lorraine xx

  • I hope you will soon be over the sepsis and doubtless you're pleased to be back home. Do contact Age Concern who should be able to help you and your husband or at least put you in touch with other organisations. Also transport to and from hospital, especially if you feel you haven't yet the strength to drive just yet.

    Thinking of you.

  • HI Irene, you have been through quite a lot, so sorry you have been unwell and then worrying about your husband certainly did not help you at all, Now you are home, do take it easy and make sure you finish your antibiotics. Could you ring your CNS and explain that you need back up support, you cant keep doing this on your own and worrying about your lovely husband. It is upsetting when you are also worried about what is going on at home, So perhaps you might see if you can get a public health nurse to check on you both or a health visitor and also look for home help, Now you are back in fighting mode hopefully you might be able to take up some of my suggestions, sending you a huge hug

  • Thank you so much

  • Thank you so much. Now stuck with acute constipation......< Insult to injury eh? Have taken laxative supplied by hospital but not working yet as I am not getting around enough I suspect or possibly not drinking enough. And so the battle goes on. ......does it ever end ladies even for a little while?

  • I have nothing constructive to say but I did want to say how sorry I am to hear you have been having such an awful time Irene. Being all alone in hospital miles from the ones we love always makes everything seem worse but I'm glad you had a supportive nurse and a caring medical team. Though I've never lost my faith I have not been a regular practising Christian either but have recently started praying and going to church again and have found it a great comfort. It isn't for everyone and we all have our own beliefs but in these dark times that we're going through it is good to find anything that comforts us and gives us the strength to go on.

    God bless you, your husband and family Irene. Sending you love and hugs 😊 X

  • I never lost my belief but have never been a regular church goer since teenage. I find it at the moment a real source of strength . You are so right about dark times us with our horrendous disease and the awful times on earth with nuclear bombs and the like being bandied around. I pray for everyone to get though all this/

  • What a dreadful time you've had. As you have refound your faith is there anyone in your local church who can drive you? Or can you get hospital transport or a voluntary group like Age UK to help? And you are not a moaner, we all need help and support at times and that includes a shoulder to cry on. Some of us, and I think as women we find this harder, need to learn to ask for help and to accept that other people can gain by helping us, so we need to ask and accept it gracefully and gratefully. I have had to learn to ask friends for help, sometimes just to sit with me, partly to relieve the pressure on my partner, who has just changed jobs.

  • Dear Irene

    You have had such a hard time but despite so much difficulties your post was inspirational . You faced so many set backs and dealt with them all. My faith gets me through each day too and it's a comfort in the really bad times . Having to worry about your dear husband added to your stress. It is good that you are home at last and getting better with the antibiotics . I was shocked at the distance you have to drive but the other ladies are giving you very good advice with regard to transport etc. I don't live in the U.K. so have no practical advice on services. I do hope you find a suitable solution. Meanwhile I will remember you in my prayers. Take care

    XXX

  • Thank you so very much. The more prayers the better for all of us.xxx

  • Thinking of you Irene.

    When you are able, do look into the Penny Brohn Clinic. They offer counselling & support-I took a friend but you can go alone.

    Meditation, mindful thinking, library full of wonders, fab healthy food & some very real & amazing advice & feedback on the nature of our mortality from staff & fellow sufferers. THAT I needed

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