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The My Turn Post
Yes some useful advice from reeksy concerning writing down things so that so that a tired and stressed mind doesn’t have to try to remember, trying to remember and possibly forgetting things will add even more stress.
Clearly everything that can be done is being done and that must provide you with some solace – no one can do more than is possible. I wish you the very best of luck and yes of course you are right not to lose hope yet but it is also important to accept the reality of the situation, which you have.matt_outandaboutFull Member
I’ve nothing to add other than a huge virtual hug and respect for how you’re dealing with this.loweyFull Member
Again, nothing to add other than my very best wishes and thoughts for you all.fossyFull Member
Big virtual hug !
Nothing I can add other than you’re doing wonderfully. Keep going.
You’re being an ablolute hero in how you’re dealing with this. My best wishes to you and your boy (who sounds like he’s a star as well) and your wife too.duncancallumFull Member
Mate dont have the words.
Wish there was something I could do.
If you ever fancy a weekend up in Sw Scotland you’d be very welcome. I know its nothing but the offer is theretoby1Full Member
Another big virtual hug, do your best, have realistic expectations of what you can and can’t do too though, you are after all a human like the rest of us!anagallis_arvensisFull Member
No words for situations like this. You clearly have a good head on your shoulders, keep talking here, some people are actually helpful. Sorry I can’t be I truly am.SandwichFull Member
Have you got someone you can talk to face to face? We’re good but talking to someone you know and can hug will help you.
Don’t be a rigid oak, be a willow and sway with it.
In the meantime carry on carrying on. I hope it went as well as possible today.
Well after 4 days Mrs F regained consciousness today. So relieved. The way the Drs were talking and managing my hopes and expectations we thought that was it…
She was very drowsy, but she opened her eyes, recognised me, we spoke. It was her talking 🙏 The therapists even got her out of bed to walk a few steps and sat in a chair for an hour.
Just gotta hope she continues to improve so that she is well enough to receive treatment for what’s left of the tumour. Which would appear to be very aggressive.
I found the Maggie’s at the hospital yesterday. A great space to relax and talk. I met 2 of my wife’s oldest friends from Uni today. They travelled 90 mins just to meet and support me. It was nice to give them some more positive news.willardFull Member
That is superb news, I am so happy for you! It’s also amazing to hear that your wife’s friends made that trip for you, it is very good of them and speaks a lot about the strength of your wife’s friendship.
she opened her eyes, recognised me, we spoke. It was her talking 🙏 The therapists even got her out of bed to walk a few steps and sat in a chair for an hour.
That is lovely. So good to hear.shintonFree Member
Great that you found Maggies, they are a brilliant organisation. Also good to hear some good news from you which hopefully will continue.
I’m finding it hard to know what to say to you as every situation is different.
But please take any help you can even if its just to bawl your eyes out while someone holds your hand. I had a 6’6″ Serbian respiratory consultant holding my hand telling me to just shout, cry, swear at the world or whatever I wanted. Maggies wasn’t open to me but they were fantastic with my mum.
I found it hard to write everything down in the end so just asked if I could record the conversations on my phone so I didn’t get things wrong.
So glad you got some much needed positive news mate and wonderful that your wife’s friends are there for you too.
I can’t comprehend how difficult all this must be for you but keep talking to those around you and to us.creakingdoorFree Member
You’re all in my thoughts, I can’t imagine the stress but it sounds like you’re doing a better job coping than would most, even if you don’t see that yourself. Keep talking to people and venting on here as needed.crewlieFull Member
It was lovely to read about your wife speaking to you again, I know how important that is. I can only agree with what everyone has already said. Keep posting, keep talking, keep looking after yourself, and as I was advised by the good people on here, take all the help you can get, emotionally, physically and financially.spacemonkeyFull Member
+1 for the many sentiments that have been shared already. You’re doing an amazing job and IMO doing the right thing by talking/venting on here too. Strangers we may be, but there’s a lot of incredibly genuine and caring peeps on here.
Man hug on the way.
Time for another update. The last week has been an emotional rollercoaster.
Despite the initial euphoria of Mrs F regaining consciousness last Thursday the medical staff were still keen to temper too much positivity. My wife was still very drowsy and tired. On Friday when I saw her she was very tired and I was unable to wake her to say goodbye.
In the ICU the official line is only one visit per day per patient, one visitor for one hour. On Saturday we got permission for both my wife’s parents to visit instead of me. I tried to ‘prepare’ them for my wife’s condition. But I think it was a shock for them, coupled with another not such good day for Mrs F. I couldn’t work out whether it was my wife was deteriorating, or just they didn’t have a reference to her condition not having seen her since she had her operation.
However yesterday was a better day. I arrived. She seemed more alert, able to talk more. The ICU consultant was fantastic and sat with us both for a good 30-40 minutes explaining next steps. And more importantly talking to my wife as the patient, rather than me.
She was moved from the ICU to a ward yesterday.
Although they are still waiting for Biopsy results they are going to start reviewing a treatment plan for what is left of the tumour. It sounds like they have a good idea what kind of tumour it is, and will prepare a plan accordingly and wait for the Biopsy confirmation. It was however pointed out that the Biopsy could return a tumour type that does not respond to any treatment.
I asked how well my wife had to be to be considered for treatment. As long as she is conscious, able to express her wishes for treatment (she wants to), and her body organs are working (they are) she can be treated.
My wife was also asked what her wishes were if things were to be escalated, ie if she deteriorated would she wish to be re-intubated, put back on a ventilator etc. She does, she wants to fight.
So all in all a better situation than earlier last week. However to temper any over optimism I have to realise that treatment may buy us weeks / months, this is better than my expectation last week of getting days / weeks if at all.
I have a great network of family and friends supporting me. And I have been using them.
‘Emotional rollercoaster’ doesn’t feel as if it begins to describe what you are going through. Your wife’s parents must undoubtedly have been very shocked by the sight of their daughter so poorly in ICU. There is however a lot of positivity in your update and that is so good to hear. As is the support you are receiving from family and friends. Best wishes.johnjn2000Free Member
@fgk, Only just seen this post and wanted to echo everything that has gone before regarding support and thoughts being with you and your family.
I cannot begin to imagine what you are going through emotionally, all I can say, and I think others have said it, is to make sure you don’t neglect yourself. You are no good to anyone if you wear yourself out and it can hit you at any time even when you think you are on top of things, this I do have experience in.
Wishing you the best of outcomes as you work through this together.
Another roller coaster week. I think my last update said my wife was moved from the Neuro ICU to a ward.
Then she was moved from a ward that accepted visitors to one that didn’t (there was COVID on the new ward). No-one notified me. My wife’s parents made the 1 hour 15 minute journey to visit her and got turned away.
This was very frustrating for a number or reasons. Not being able to visit I was not getting much information from the medical team on my wife’s progress, nor able to judge for myself. And no one seemed to be able to tell me what the next steps for her treatment were to be.
After a lot of phone calls and emails exploring both NHS and Private options I managed to get hold of the lead Neurosurgeon who was due to be performing my wife’s elective surgery before the emergency procedure was performed. He visited my wife and I had a good phone call with him after, again not much of what he informed me was good news but at least there were some positive outcomes.
On Thursday my wife was moved from the City Hospital Neuro Department to the Oncology Ward in our local hospital. It’s closer to home, there are very few visiting restrictions, the day to day care seems more personal and attentive and will continue to be lead by the city hospital.
My son visited Mrs F, it’s the first time they have seen each other for just under 2 weeks. The ward have offered me support as well.
I have been informed numerous times how aggressive my wife’s tumour is. It is malignant and growing very quickly. Right now it is a race against time to get my wife well enough so that she might be able to cope with treatment to arrest the growth of what is left of the tumour. This will be a course of Radiotherapy and Chemotherapy. One of the ‘benchmarks’ of whether she is fit enough is the physios need to get her mobile and well enough to come home. She’s only managing a few steps with the Physio / OTs assistance. The physios asked me about an ‘end game’ for my wife. There was some chat about setting up a bed and other assistance downstairs. I must admit this kind of thing is very scary for me – selfishly do I or our family want to be caring for her like this at home.
That said every day I’ve visited there are small improvements in how alert she is, how long she remains awake. Unfortunately, her short-term memory is not very good right now.
I was also informed if she gets well enough for treatment, this type of tumour invariably starts to grow back months after treatment stops. So we are just buying time. All the time we are trying to balance all the positive steps and her apparent improvements with the reality of the situation.
I guess up to now most of my posts I’ve tried to keep the emotion out of it. That doesn’t mean I’m not feeling fear hurt and pain. Every now and again the enormity of the situation overwhelms me. I have those feelings of fear and panic. How will I cope? The feelings pass. I can’t give up. For my son if no-one else.
It’s half term this week. I’m going to have to juggle visiting, keeping my son entertained. I’ll try and use the support of his friend’s parents a bit.
There was some chat about setting up a bed and other assistance downstairs. I must admit this kind of thing is very scary for me – selfishly do I or our family want to be caring for her like this at home.
A very difficult one
I did this for Julie and did her care. Its my professional world and its still given me trauma. However it was also very rewarding and no doubt at all for Julie it was best. You need to think about this one very carefully and make the right decision for the right reasons. What is her view? Whats your best guess as to what she would want?
For Julie and I it was also positive in that I could do her care and make it the best that I could which helped me. I could also make her wish to go home to die happen.
You will get support from social services and community NHS
There is no one right answer on this only – only whats right for your family. Again PM if you want.MoreCashThanDashFull Member
Can offer nothing but virtual hugs and the reassurance that someone here is listening to you.
I have no idea how anyone would cope with something like this, you are doing incredibly well, but use whatever support is available and don’t be too proud to cry when you need to.
I also want to say that home care can be fairly disastrous. You are right to think long and hard about it.kimbersFull Member
Amazing that your holding together so well tbh.
Thoughts with you all
Every now and again the enormity of the situation overwhelms me. I have those feelings of fear and panic. How will I cope?
I have no personal experience but it is not difficult to understand how you must at times feel totally overwhelmed with enormity of the situation.
I can see from your updates that are clearly holding things together fgk. You appear to be coping remarkably well, although you might not always feel that you are.
No doubt that you have access to professional support and I really hope that at those times when fear and panic threaten you feel able to approach them.
You are a credit to your wife, your son, and yourself fgk. You are doing all that can be done. Take care.
A long overdue post. Reading my previous post things have moved on so much. Positively.
My wife’s condition improved noticeably every day. The love and care she received at the Oncology Ward in our local hospital was amazing. She received treatment from the therapists daily. I got feedback daily. I also got some very lovely support from the hospital Palliative Care Team. It was about me and my son. And continues.
My son has seen his mum every day. Last weekend she was well enough that we put her in a wheelchair. Wheeled her down to the coffee shop in the hospital. Then outside to meet a lot of our family and our dog. Then the nurses let us smuggle wuff into the ward for a little while.
On Wednesday my wife got transferred to another Hospital. Not so local (about 35 mins drive). It’s what I’d consider a community hospital that has a rehab ward. This was on the recommendation of the therapy team at her current (at the time) hospital.
I met the Therapists the day she arrived. A specialised Neuro-Physiotherapist, plus Occupational, and Speech & Language Therapists. I had this overwhelming feeling she was in the right place.
Mrs F improves daily. We had a video consultancy with an Oncologist on Thursday from her rehab hospital to our closest local hospital with a Neuro Oncology Department. I am taking her to meet the Oncologist this Thursday at this Hospital. I get the impression that if a patient can walk in they will consider them well enough to embark on treatment. Which will involve 6 weeks of daily Radiotherapy plus an Oral Chemotherapy. Then a further 6 months of Chemotherapy if my wife, the patient, is well enough and up for it.
What I haven’t pointed out is all these choices are patient led. At all stages my wife is asked what she would wants to do. I am asked how I feel about things. But the decisions are my wife’s, and the medical team’s.
Her short term memory isn’t great. She struggles to remember what her initial diagnosis was. She’s aware she isn’t right and wants to get better. And ready to do whatever that takes. I remind her daily where she is. Why she is there. She accepts that. She just wants to get home. She has had many visitors. Friends, family. Our son every day. I believe it all helps as well as the amazing support she has received from all of the Drs, Nurses, Therapists and Carers.
I’m beginning to let myself believe we will get her home sooner rather than later. I don’t believe she will need formal *care* per se. Her short term is bad enough that I think, for a while at least, she will need someone accompanying her most of the time. But she can walk, dress herself and mobility improves day by day.
I had a meeting with my work this week. I had kept them informed weekly. I felt I needed to see them face to face to explain my situation. I was asked if there anything they could do for me. I responded by saying to continue to support me as they had done up to this point. I was looked into the eye and told ‘I don’t even have to ask’. Take as long as I need.
This has been the best few days / week since this whole shit show started 8 weeks ago now. It’s been the most positive week so far. I’m not losing sight of the reality of this situation, which is, if my wife is well enough to receive treatment – the growth of the tumour will be ‘arrested’ until the treatment stops. Typically the tumour will start growing again after a few months of treatment stopping.
After the original diagnosis we just wanted to buy a bit of time. It seems we *might* just be allowed that.
We’ll all take a bit more time if we are allowed.
I’m not sure I can really relate what I felt whilst reading that. I’ll just say I’m really glad to hear that things are going as good as you could have hoped for at the moment and long may it continue my friend.PhilbyFull Member
Pleased to hear there is progress and that there is an improved chance of your wife coming home. Here’s hoping your next few posts show continued positive news. Stay strong!
Thanks for the update fgk, that is some really fantastic news. So glad to hear such positive stuff like “she can walk, dress herself and mobility improves day by day”. And also the level of care and support your wife and yourself have been receiving. I am stunned to realise that it’s only been 8 weeks since you first posted, so much has happened, emotional rollercoaster doesn’t seem sufficient to discribe what you must have gone through!
Delighted to read your update, thank you.
I’m so glad that things have been better, and that you and your son have been able to spend some good time with your wife/his mum. That matters so much. I hope you all get a lot more of that – as much as possible.
I saw the update and feared the worst!
I’m so glad your work are being really supportive, you are obviously a realist on the situation but I can see your taking to good parts and making the most of it.
A massive amount of love to your family from me.stanleyFull Member
I’ve just stumbled across this thread. So sorry to hear what your family is going through. I can’t imagine how tough this is for you, but it sounds like you are a hell of a strong person and you are getting through this with great dignity.
Keep talking and make use of places like Maggie’s. Ask for help too when you need it.
All the bestmonkeysfeetFree Member
Firstly sending all the best wishes I can to you and the rest of the family.
Mrs MF was diagnosed with breast cancer ( the worst kind!!) in Feb. It’s been a shift few months, but things are looking up after chemo and surgery.
Our oncologist has been superb, and i just can’t fault the amazing NHS.
All I’ll say is try to stay positive, even when it’s crap. Try to look after your own mental and physical health (something I’ve not really done)
If you need to talk or let off steam please message me. I’m more than happy to pass my mobile if you need a chat X Steve.
Another update after some significant changes.
As I said above Mrs FGK was moved from our most local hospital to another hospital that had some specific rehab facilities and access to a neuro-physiotherapist. Although a little further away to visit it was a great facility and she made great progress. So much so – last week she was well enough to travel an hour with me from the rehab ward to the hospital where the Oncology team are based. She met the Oncology Dr and Nurse Specialist was offered treatment for what is left of her tumour – ‘to arrest the growth’ for a little while.
On Friday she came back to our house with the Occupational and Speech / Language therapists. She was assessed and is now discharged and at home!
Short term memory isn’t great. Her speech is still muddled but she can look after herself with our assistance. We have continued assistance from Therapists at home and a little extra assistance from a ‘Reable’ team as well around meal times.
That said we had a reminder that this rollercoaster is a long way from over. Her headaches have returned, she is needing to sleep more and speech is getting a little more muddled. Trying to stay positive I tell myself this is due to the change in environment and circumstance.
Her steroid dose has been increased to address the headaches. Treatment is a little way off from commencing because some pre-treatment scans and a mask have to be made for her to ensure the radiotherapy is directed accurately. I’m trying to remain as positive as possible but am reminded getting to the treatment stage isn’t a done deal quite yet.
It’s taking a little time for both myself and FGK Jr to adjust to having Mrs FGK around again after 5 weeks on our own and she does need a lot of support and repeats herself a lot. Jr senses she doesn’t feel very well some of the time and is worried. But not wanting to talk about it. He still hasn’t asked if his mother might die from the illness. It is something we still need to approach with him.
I reached out to a local charity providing pre / post bereavement support for youngsters. They are happy to support FGK Jr, and his school well-being team made a referral.
Very good news to hear your wife is home with you again. It obviously offers some challenges but great news none the less.
Equally good to hear Jr will be receiving some support. I’ve no idea how you begin to discuss such things with him, very difficult and my thought are with you all.
Time for an update. Mrs F has been home nearly 4 weeks now. I’ll be honest it’s tough. I’ve turned into a full time carer.
My wife was struggling with ever worsening headaches. The steroids have been upped and upped to counter this.
I’ve also seen my wife deteriorate over the 4 weeks she’s been home. Her language has got worse, more jumbled and made up words. Less steady on her feet. Today she had a really shaky arm that is getting worse. She’s very tired and would just sleep if I didn’t wake her up for meals / visitors. Everyone who has visited her recently agrees she is doing less well than around the time she got discharged.
I feel we’ve fallen between the care cracks a bit. She seems to be under the care of 3 different teams. Oncology for the treatment of the tumour, a Palliative care provider, and still under the therapists who’ve been with her since she was discharged. It just doesn’t feel very joined up or just one person overseeing all of the care and therapy.
She is very aware of, and frustrated about what she is able and unable to do, it’s not where she wants to be. She’s worried she’s becoming a burden to myself and my son (she’s not of course). And getting quite depressed. She’s said she wished she could die more than once. There’s a lot of repetition I am finding quite wearing.
So much more I could say. But it would sound like whingeing. Daily radiotherapy starts next week. Will it make her any better I don’t know. We’ve had a discussion about if the treatment makes her feel worse then we need to have another discussion about whether treatment is worth continuing.
Work are still paying me. I don’t know what I would have done if they haven’t.
Jr is aware of the full diagnosis and is receiving support from a local child bereavement charity.
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