A series of disconnected (but kind of connected) thoughts and feelings, courtesy of mementomori

That's not a good thing to do Moi, what if they find you're guilty  

Tvman xx 

I know !!!! I'm usually guilty of something ha ha . Your right Tvman I could see family physically relax when told results. XX

Moi

Moi

Hi MM sorry I'm late answering  uou. Yes morning are the worst, It takes a while to straighten up and get my left leg to join the game, a few cups of tea breakfast and a shower, by then I'm in working order, hang in there MM day by day is the best way xx

Moi

No worries Moi, as you said day by day and I’m in no hurry to get anywhere or do anything so don’t mind waiting on a response! I hope you have an amazing weekend full of happiness and love! 

Hi mementomori , I understand fully when you say a wheelchair won't fit into your home, I can get around without a wheelchair in the house. I can get around my house with aids that Occupational Therapy (OT) have given me, I have a walker, a seat for the shower, a seat for the toilet, a perching stool for the kitchen and safety rails at both the front and back doors. If your palliative care team or GP haven't spoken to OT, then ask them to or phone them yourself,

Good luck mementomori 

Tvman xx 

Thanks Tvman! I actually managed to find a wheelchair that I think will fit into my house - I'll find out for sure soon, I'm currently staying with my grandparents as their house is more set up for those of us who are differently-abled! I've also asked for an OT assessment of my house, although it's a rental so there will be limits to what we can do. I'm sure the OTs have dealt with plenty of renters before though, so I'll let them deal with it.

I think I was struggling with the idea of a wheelchair, but I spent most of the day yesterday navigating the hospital myself in the wheelchair and felt so much more steady and independent that I decided to just go for it. I think that I just needed to get to this point on my own, rather than have it suggested by others. 

It's strange - I think it's my stubbornness coming through, but I really find myself resisting suggestions from others - I am my own problem solver and always have been, but it hasn't been long since I've had to adjust to all of these changes. Ultimately, I don't really need my "problems" solved by others, I just need to be given the space to come to acceptance in my own time before I can tackle them.

Hi again mementomori , I'm sure you don't mind me mentioning how I overcame my difficulties without advising you what to do. 

I was given a manual wheelchair from OT and I was thankful. I used it a lot and it gave Mrs Tvman a break from trying to push me around. Before that, my GP surgery, and I mean one very helpful staff member in particular, saw the pain etched on my face and had the know-how to contact the Red Cross immediately as no doubt they had previous knowledge and the Red Cross stepped up and offered me the loan of a wheelchair which I picked up from a local hospital until OT had given me the use of a manual wheelchair around 4 weeks later. That then gave me the freedom to go anywhere and gave Mrs Tvman a welcome break as she was struggling sometimes to have the strength to push me, given her own back problems. 

Problem solved? No, not really. I had the upper body strength but I have arthritic elbows caused by another rare blood condition, haemachromatosis, added to my rare MDS blood cancer. On my rare forays into the local large town, I struggled with high kerbs and some excessively sloped pavements toward the road to remove rainfall. Not to mention strong winds in my face that required a super human effort to overcome. 

One day I went to an event run by Motability where several manufacturers exhibited vehicles to take a spin in to see what was available in the market. On exiting the show I passed a guy selling motorised scooters and to cut a long story short I left with one disassembled in my boot!

It is the difference between night and day. Life is so much easier, no need for bulging muscles and it is narrower than the standard manual wheelchair so it may fit through small doorspaces in your own house. Sorry for the long post, mementomori..

Take care

Tvman xx 

Thank you for sharing, as always, Tvman! I will definitely consider a motorised wheelchair at some point if needed, and a narrower width sounds better. 

I’m looking forward to my OT assessment and getting back home with my partner. As much as I love my grandparents, I feel like I am always being watched when I just want to get on with things now!

Unfortunately, I don’t have the ability to get myself to treatment and my partner works so I’m stuck here for the time being. 

Not to be ungrateful, I love them very much and their house has been a safe haven throughout my illness, particularly in times when my mental health was struggling. 

It’s great to hear the Mrs Tvman can take a bit of a load off! I know our loved ones never make us feel like a burden or like we’re too much work, but it’s always good to get some independence back, for ourselves and for our loved ones. 

<3 MM

Hi again mementomori , I'm sure your grandparents are loving having you to stay at their home. Mrs Tvman and I would only be too happy for either of our grandchildren to stay with us especially if they were unwell because we love them to bits.

Something came to mind when you mentioned your partner is working. I don't know how matters are in your part of the UK I'm in Northern Ireland and here if you're diagnosed with cancer, your spouse or partner has an automatic right to accompany you to hospital for said cancer appointment, unless in the case of a small team the company would suffer from one employee being away from their post. However that may be a hard argument to reinforce because an employee has to have time off for holidays.

Mrs Tvman works as a classroom assistant in a primary school and she has yet to be denied time off, and she is away from her post for around 3 hours each time.

Are you aware of such employment law in your part of the uk mm?

Take care

Tvman xx 

I'm actually not located in the UK - I'm in Australia. However, I haven't really been able to find a forum like this that is Australia-based, and I have made too many friends to consider changing forums, to be honest!

My partner is struggling with this entire situation, to be frank. I am trying my best to protect him for as long as I can, without keeping any of the realities from him. This is of course 100% something I feel, and 0% something he feels - he loves me so much and would do anything for me, but I love him so much that I really would rather protect him.

Additionally, my partner has just moved 2 hours from his hometown to live with me. This means he is very new at his job and the last thing I want to do is have him jeopardise his position due to taking so much time off. I know his workplace would understand, but I suppose I'm just not ready to have that conversation yet.

I suppose it's similar in a lot of ways to coming around to mobility aids - I need to get there in my own time.

I have made an Advanced Care Directive (I'm sure there's something similar in the UK but not sure what it is called) that I will have the doctors use to make decisions about my care. I feel my days are numbered, which I'm okay with I think - I guess I don't have another choice. I just feel like I haven't had a lot of time to adjust to everything - I only found out that I was incurable on the 24th of January!

It's scary thinking about all these things at the age of 27, but I keep getting more tumours and, while the radiation treatments are working to get on top of them, we are unable to treat the same place twice. Additionally, my doctor is very reluctant to consider further chemotherapy due to the real risk of death - I've asked for a second opinion as I'm going to die either way, but I feel like my timeline is short and nothing is happening quickly enough.

Thank you for being here to listen to my rant, this place is truly a safe haven.