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Hi again and first a ((hug))

I am sorry to hear how things are developing and all I can say is, I hope that his team can get things back on a positive direction.

COVID has made a cancer journey extremely challenging and I do get how you are feeling.

It’s always good to talk and could I recommend that you call the Macmillan Support Services to get to talk with one of our support workers.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00

((hugs))

Thank You

These strange times make treatment challenging and for partners its even harder as you cannot attend appointments or treatments to be there supporting, having recently spent some time in hospital I fully understand how hard it is for both of you. Share your thoughts or vent as much as you need if it helps, someone is always around.

Rchop is a strong chemo that works on a number of lymphomas, do you know which type he has? lets hope this next round starts to knock his disease back.

John 

Hi John thanks for your support. I know that it is called non-hodgkins lymphoblastic lymphoma. I was told that it had transformed to high grade.  He has has had a number of reviews since he was declared in remission May 2019 after 3 cycles of cheme. Each review consisted of blood tests then a week later a discussion with his cancer doctor. These took place each month then quarterly and all were clear showing he was still in remission. Then the next review was due to take place with a 4 month gap on 22 December. However he was the getting the back pain I described so went to local doctors at end of November as explained above. I find it difficult to get my head around the fact that not only has it come back but that it is so aggressive. His cancer doctor has told me that it is multiplying at an extremely fast rate, even more so than before his R-CHOP. There is no bed available currently available on the cancer unit so he is on general ward in a room on his own. His doctor said he wants him on the cancer ward as soon as possible, so that ideally he can be given Rituximab on Monday and then on Tuesday have the chemo itself which according to what he had last time was vincristine, doxorubicin and cyclopspamide. Yesterday I was told that he was not given a full dose as it it severe in its side affects (at least I think thats what was said) but that this time he will given a full blast (my word). The signs were good after the last lost as the constant monitoring of his bloods showed improvement and he was doing well. Last Sunday however he didnt feel so good and its been downhill since then, resulting in him been admitted to hospital. Hopefully I will get him home by the end of the week. I pray his bloods improve and can continue with treatment to return him to remission again. I know that to some the age of 72 may sound old, but it really is. I sincerely hope he had a better night than I did but I doubt it. Each time I speak to him there is much noise Alarms and beepers always loudly going off non-stop its enough to give you a headache and I am the other end of the phone. He says its constantly like that. I guess it must be indicative of how stretched the staff are that they cannot re-act to them as quickly as they would want to. Despite my own heartache I know everyone is doing the best they can. I just wish there was someway I could take this burden from him and have him not only home but safe and well. But right now I would settle just to be with him and hold him even if its just to touch his hand. When we first met he was not a touchy, hand holding type of person but I am and would always reach out to him to gently touch or hold his arm and then his hand and before long he started always reaching out to me first and we never walk anywhere without holding hands. 

Hi again, being in a room on his own means sometimes it can take a while to reset timers on drips or pumps, that happens on normal wards too, in my experience, they are annoying but necessary. & 72 is still young, I have talked to people or their children mainly who were well into their 80's who were receiving rchop or in a couple of cases mini rchop which is dose adjusted. So lets hope that bed becomes available and treatment can start, have they mentioned using steroids in the short term until treatment starts? 

I do wish I had some magic words that would make this better for you however Covid is making things more challenging than we would want it to be, hang on to the fact treatment has worked and keep pushing to ensure it restarts asap. 

take care

John

Hi John, The only medication he is receiving is fluids and antibiotics for the dehydration and diverticulosis that has caused infection. When the doctor did his morning rounds today my husband told him he was having pains in his chest on one side. The reply he got was that the chest x-ray done on Thursday was clear. Nevertheless he is in pain, eventually after much discussion they have agreed to do an ECG which has been done but no results given. Each time he sees someone its a different person, be it doctor or nursing staff. I know they are busy with different shifts and need to prioritise. The sooner he is moved to the cancer ward the better but we have been told this wont take place until at least Monday. It feels like trying to navigate a maze totally blinded. All we can do is wait it out for now. As I cannot visit or spend time with him I have begun to prepare what practical things I can for when he comes home as I know when he does that after the chemo he will need me with him and its going to be a difficult journey ahead. I have arranged for our prescriptions to be delivered instead of me collecting them and also set up an online shopping account for groceries to be delivered and booking the first couple of slots . Next on my agenda is to ring Mcmillan Support and find out how to arrange for the nursing care at home should it become necessary. I dont want to have those conversations in front of my husband if I can help it. I want to be prepared as possible. Once he gets home depending on the results of his bloods and decision of his doctor whether further treatment is beneficial or not, then that is when I will have the conversation with my husband. I simply am not prepared to do it whilst he is alone in hospital without me.

I can only send some ((hugs)) and let’s look for things to move in a positive direction soon. 

Over my years of treatment I must have had 80 days/nights in a single room with a number of weeks in isolation with my wife not even allowed in (none COVID times). so do understand the challenges this all brings. It’s a very had place to be so let’s look for movement on this.

Macmillan will give you the help and advice needed if you should get to the point where treatment is no longer beneficial. From my experience the GP and district nurses also play a key role and his specialist nurse may be able to access support like Marie Curie nurses.

Being prepared is necessary but lets hope its not needed.

Thank you. I am sat here waiting for the phone to ring. My husband is expecting his specialist doctor to see him this morning so we deferred our early morning call until after then. The current plan was for him to start the treatment today and tomorrow but speaking yesterday my husband said that he was getting told that may not be possible. He has still not been transferred to the cancer ward. So I rang the ward and received the confirmation that only his Cancer Specialist doctor can make that decision. I explained that my husband was probably confused as trying to find out if it was still going to happen. Best guess is that as the other staff cant make that decision he has come away the impression that he wont get it or they would have said he would get it. I then spoke to my husband and reassured him that they are not in a position to say one way or another so not to read anything into it and wait until he speaks to his doctor this morning. I will then also speak the his doctor to clarify things. I know that I need to ask if the treatment does not go ahead as planned will this be a deferral or have the goalposts moved and has he become too ill not to have it all, if thats the case I want him home. I thought that the worse case scenario would be losing him but its not the worst is if I lose him and he is all alone in hospital and we dont get to be together again. I pray I am doing that old saying prepare for the worst and expect the best. He is my best and I am not nor ever will be prepared to let him go but neither do I want him to be in pain. I hope this call comes soon. I have rang Mcmillan to lay the ground work for getting help and they explained a referral from the GP would be needed to have help at home. Luckily we live in a bungalow so that should helps make some practical things easier.

Good morning , sorry for not being around but there have been a few things going on at home. These are indeed challenging times but lets look for some positive movement soon.

This may be late but these are some links I found that may be helpful.

Care at home

• GP/hospital teams – they can help with support at home
• Carers Trust and/or Carers UK
• They can get in touch with their local adult social services for a needs assessment too – they’ll come to the home to see what extra support they feel they might need.
• There’s also some booklet that might be useful: caring for someone with cancer has lots of practical information, how are you feeling and supporting a loved one through cancer.
• In Your Area on the main site will show them what’s nearby in the way of support groups/information points.
• The Support Line, 8am-8pm, 7 days a week on freephone 0808 808 00 00 – always a good one to add in just in case!
• Types of Macmillan Nurses

I understand your 'thoughts' about the worst but lets not go down that road....... but from my very recent experience with my mum, she did not pass away without family at her side.

((hugs))